Investigation of Missouri’s Use of
Nursing Facilities and Guardianship
for Adults with Mental Health
Disabilities
United States Department of Justice
Civil Rights Division
June 18, 20 24
TABLE OF CONTENTS
Summary of Findings .................................................................................................. 1
Investigation ................................................................................................................. 2
Legal Framework ......................................................................................................... 3
Missouri’s System for Serving Adults with Mental Health Disabilities ................... 4
A. Three State agencies share responsibility for serving adults with mental health
disabilities ................................................................................................................ 4
B. Missouri oversees and funds a network of community-based mental health
providers ................................................................................................................. 5
C. Missouri uses guardianships for people with mental health disabilities ................... 6
People with Mental Health Disabilities are Unnecessarily Placed in Nursing
Facilities and Under Guardianships ........................................................................... 7
A. Nursing facilities are institutions that segregate adults with mental health
disabilities from the community ............................................................................... 7
B. Thousands of adults with mental health disabilities are living in Missouri’s nursing
facilities ................................................................................................................... 9
1. Adults with mental health disabilities are concentrated in a small number
of nursing facilities ................................................................................................... 11
2. Adults with mental health disabilities generally have lower nursing care
needs than other people in Missouri’s nursing facilities ............................... 11
3. Adults with mental health disabilities are generally younger than other
people in Missouri’s nursing facilities ................................................................ 12
4. Adults with mental health disabilities generally stay institutionalized
longer than other people in Missouri’s nursing facilities .............................. 13
C. Guardianship is a key feature of the State’s system of caring for adults with mental
health disabilities and leads to their unnecessary segregation in nursing facilities 13
1. Thousands of adults with mental health disabilities are under
guardianship in Missouri ........................................................................................ 14
2. The State seeks guardianships directly and promotes their use ................ 15
3. Guardianships are the primary tool in Missouri for serving people who
have not been easy to engage in treatment ....................................................... 15
4. Heavy caseloads lead guardians to resort to using nursing facilities rather
than identifying and connecting people to community-based alternatives
16
5. Adults with mental health disabilities living in Missouri’s nursing facilities
generally do not need guardianships .................................................................. 18
D. Adults with mental health disabilities living in nursing facilities could instead be
appropriately served in integrated settings ............................................................ 20
E. Adults with mental health disabilities living in nursing facilities do not oppose
receiving services in integrated settings ................................................................ 23
1. People with mental health disabilities living in nursing facilities do not
oppose returning to the community .................................................................... 23
1. Public administrators agree that adults with mental health disabilities do
not belong in nursing facilities.............................................................................. 24
The State Could but does not Use Effective Community-Based Services Instead
of Nursing Facilities and Guardianship ................................................................... 24
A. Before their placement in a nursing facility, many adults with mental health
disabilities did not get intensive community-based mental health services ........... 24
B. Missouri has not provided the Permanent Supportive Housing and Assertive
Community Treatment necessary to prevent guardianship and unnecessary
admission to nursing facilities, or support transitions from both ............................ 26
1. Assertive Community Treatment .......................................................................... 26
2. Permanent Supportive Housing ............................................................................ 27
C. Other services that people with mental health disabilities need to avoid
guardianship and institutionalization are available but limited ............................... 29
1. Case Management – “Community Psychiatric Rehabilitation” .................... 29
2. Peer Support Services ............................................................................................. 29
3. Supported Employment .......................................................................................... 30
4. Mobile Crisis Response .......................................................................................... 31
5. Crisis Stabilization Services .................................................................................. 32
6. Outreach and Engagement Initiatives ................................................................. 32
7. Supported Decision-Making ................................................................................... 33
Missouri has Failed to Divert and Transition Adults with Mental Health
Disabilities from Nursing Facilities .......................................................................... 34
A. Missouri’s nursing facility eligibility criteria and reimbursement systems enable and
encourage the long-term use of nursing facilities for people with mental health
disabilities .............................................................................................................. 34
B. Missouri’s system does not divert people with mental health disabilities from
nursing facilities ..................................................................................................... 35
C. Missouri lacks other effective processes to support diversion and transition from
nursing facilities ..................................................................................................... 36
DMH Fails to Exercise Meaningful Oversight of the Behavioral Health System to
Prevent Unnecessary Nursing Facility Placement .................................................. 38
It is a reasonable modification to serve adults with mental health disabilities in
the community ........................................................................................................... 39
Conclusion ................................................................................................................. 42
SUMMARY OF FINDINGS
Thousands of Medicaid-eligible adults with mental health disabilities living in Missouri’s skilled
nursing facilities (often referred to as nursing homes or Level II facilities) are unnecessarily
separated from their communities. Around half of them are under 65. Most require little or no
assistance with basic physical activities. On average they have been in nursing facilities for at
least 3 years. Half of this group is clustered in just 39 of Missouri’s 500 nursing facilities. Many
of them are under guardianship, with all decisions about every part of their lives made by
another person.
These adults are subjected to unnecessary stays in nursing facilities generally because of a
series of systemic failures by the State. Specifically, the State fails to provide sufficient
community-based services, fails to assertively engage people who have struggled with
traditional services, and improperly relies on guardianship for people who have frequent
hospitalizations or otherwise are not engaged in treatment. When a guardian is appointed for a
person with a mental health disability, the guardian can, and frequently does, place the person
in a nursing facility. One provider called guardianship in Missouri a “sentence to be locked in a
[nursing facility].”
Carmen
is one of the many people we met w ho experienced guardianship as a pipeline to a
nursing facility in Missouri. Carmen spent much of her childhood in and out of hospitals. After
she turned 18, a hospital where she had been admitted petitioned for the appointment of a
guardian, and the guardian placed her in a nursing facility. Carmen’s cousin said they talk in
their family about how Carmen slipped through the cracks and did not get the services she
needed before or after her placement in a nursing facility. As of February 2024, Carmen had
spent over two years in a nursing facility.
Like Carmen, Pamela also cycled in and out of psychiatric hospitals and was placed under
guardianship and, ultimately, in a nursing facility. “Pamela has tons of potential—she’s capable
of much more than she’s allowed,” said Pamela’s mother, who has struggled to get Pamela the
mental health services she needs to live in the community. “The system isn’t set up to benefit
the people they are there to serve.” This report highlights many more stories like Carmen’s and
Pamela’s.
Almost uniformly, adults with mental health disabilities in Missouri’s nursing facilities do not want
to live in these institutions. They dream of lives integrated into the community, consistent with
the Americans with Disabilities Act’s (ADA) requirements. They want to enjoy simple pleasures
of daily living, like going to a fair, spending time with friends and family, having a pet, working,
and simply being “independent.” Angela, who is in her late 50s and was placed in a nursing
facility by her guardian told us: “I have a dream that one day I will be free. Free to live on my
own, free to live within my community, free to have overnight visits with my grandchildren, free
to not be told who I can associate with, free to not have someone place me in a nursing home
and leave me, without any regard to my well-being mentally and physically, most of all just free
to live my life.”
1
1
All the people discussed in this report are identified using random pseudonyms.
1
We found that almost none of the adults with mental health disabilities living in nursing facilities
in Missouri need to be in these institutions, even for short-term stays.
2
Key mental health
services—including Assertive Community Treatment, Permanent Supportive Housing,
supported employment, peer support, crisis services, and outreach and engagement—could
support these adults living in their own homes and communities. Instead of providing sufficient
community-based services that the State admits could prevent institutionalization and
guardianships, the State promotes and facilitates the use of guardianships and nursing facilities
for adults with mental health disabilities. Instead of diverting people with mental health
disabilities from unnecessary nursing facility admission or transitioning people from nursing
facilities who do not need to be there, people are sent out of sight and out of mind. Instead of
focusing resources and attention on serving this group of people in the community, the State
relies on nursing facilities as a key piece of the system for serving people with mental health
disabilities.
Under the ADA, the State must make reasonable modifications to enable adults with mental
health disabilities to live in the most integrated setting appropriate to their needs.
INVESTIGATION
After receiving a complaint, the Department of Justice (DOJ) opened this investigation on
November 16, 2022. We examined whether Missouri unnecessarily institutionalizes adults with
mental health disabilities i
n skilled nursing facilities and whether the State’s use of
guardianship for these adults contributes to the institutionalization. During the investigation, DOJ
attorneys, investigators, analysts, and expert consultants:
• Reviewed documents and data, including policies, reports, Medicaid billing information,
and individual treatment records of a sample of adults who are living in nursing facilities.
• Interviewed over 30 State officials and dozens of public administrators—the county
officials who are often appointed as guardians for adults with mental health disabilities.
We also interviewed over 130 directly impacted people and stakeholders including
current and former nursing facility residents and their loved ones, people under
guardianship, mental health and guardianship advocates, and lawyers. These interviews
included conversations at an in-person listening session in Kansas City.
• Visited over 60 providers and facilities, including nursing facilities, community mental
health providers, crisis centers, psychiatric hospitals, and housing sites for people with
mental health disabilities across Missouri.
3
2
As discussed below, adults with mental health disabilities in Missouri tend to be placed in nursing
facilities for their mental health symptoms. However, these settings are not intended for and do not offer
intensive mental health treatment.
3
Mental health disabilities refer to diagnosable mental, behavioral, or emotional disorders that cause an
impairment that substantially limits one or more major life activities. See 42 U.S.C. § 12102.
2
DOJ appreciates the State’s assistance, cooperation, and openness throughout the
investigation. We thank the people with mental health disabilities who shared their own stories,
and the community stakeholders who provided valuable information.
LEGAL FRAMEWORK
The ADA provides a “clear and comprehensive national mandate for the elimination of
discrimination against individuals with disabilities.”
Under Title II of that Act, public entities may
not discriminate based on disability.
4
One form of prohibited discrimination is unnecessary
segregation.
5
Segregation in an institution is unnecessary when (1) alternative community-
based services are appropriate, (2) the affected people do not oppose community-based
services, and (3) community-based services can be reasonably accommodated within the
State’s broader disability service system.
6
Instead of discrimination by segregation, the law
requires that public entities “administer services, programs, and activities in the most integrated
setting appropriate to the needs of qualified individuals with disabilities.”
7
8
9
“The most integrated
setting” is one that “enables individuals with disabilities to interact with nondisabled persons to
the fullest extent possible[.]”
Congress’ decision to prohibit unnecessary segregation arises from its findings that “historically,
society has tended to isolate and segregate individuals with disabilities,” and that this isolation
and segregation continues and persists in “critical areas” like institutionalization.
10
The decision
“reflects two evident judgments. First, institutional placement of persons who can handle and
benefit from community settings perpetuates unwarranted assumptions that persons so isolated
are incapable or unworthy of participating in community life,” and second that unnecessary
4
42 U.S.C. § 12101(b)(1).
5
42 U.S.C. § 12132.
6
Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581, 599-600 (1999). Individuals who are at serious risk of
unnecessary institutionalization need not wait until they are admitted to an institution before bringing a
claim under Olmstead. Waskul v. Washtenaw Cnty. Com’ty Mental Health, 979 F.3d 426, 460-61 (6th Cir.
2020) (collecting cases); Davis v. Shah, 821 F.3d 231, 263 (2d Cir. 2016); Pashby v. Delia, 709 F.3d 307,
322 (4th Cir. 2013); Radaszewski ex rel. Radaszewski v. Maram, 383 F.3d 599, 608, 615 (7th Cir. 2004);
Townsend v. Quasim, 328 F.3d 511, 515, 520 (9th Cir. 2003); Fisher v. Okla. Health Care Auth., 335 F.3d
1175, 1181-82, 1184 (10th Cir. 2003); J.P. ex rel. Ogden v. Belton 124 School Dist., No. 20-cv-189, 2020
WL 3643131, at *2 (W.D. Mo. July 6, 2020).
Other forms of prohibited discrimination by a public entity include limiting a person’s “enjoyment of any
right, privilege, advantage, or opportunity” provided by the public entity and enjoyed by others who
receive it, 28 C.F.R. § 35.130(b)(1)(vii); using methods of administration that have the effect of
discriminating, id. § 35.130(b)(3); or imposing a surcharge on the receipt of public services. Id. §
35.130(f).
7
Olmstead, 527 U.S. at 587.
8
28 C.F.R. § 35.130(d).
9
28 C.F.R. pt. 35, app. B, at 703 (2023).
10
42 U.S.C. § 12101(a).
3
confinement “severely diminishes the everyday life activities of individuals, including family
relations, social contacts, work options, economic independence, educational advancement,
and cultural enrichment.”
11
In Olmstead the Supreme Court found discriminatory “dissimilar
treatment” exists when people with disabilities must “relinquish participation in community life
they could enjoy given reasonable accommodations,” to get needed services, while people
without disabilities “can receive the medical services they need without similar sacrifice.”
12
Public entities are required to “make reasonable modifications to policies, practices, and
procedures when the modifications are necessary to avoid discrimination on the basis of
disability,” unless doing so would “fundamentally alter the nature of the service, program, or
activity.”
13
Even when a State relies on private entities to deliver some of its services, it is still
ultimately responsible under the ADA.
14
If a state fails to reasonably modify its service system to
provide care in the most integrated setting appropriate, it violates Title II of the ADA.
15
Expansion of existing services is a reasonable modification.
16
A public entity may show that
modifications would be fundamental alterations if the public entity has a “comprehensive,
effectively working plan for placing qualified persons…in less restrictive settings.”
17
MISSOURI’S SYSTEM FOR SERVING ADULTS WITH MENTAL HEALTH DISABILITIES
A. Three State agencies share responsibility for serving adults with mental health
disabilities
There are three agencies in Missouri primarily responsible for serving or coordinating services
for people with mental health disabilities living in the community and in nursing facilities:
11
Olmstead, 527 U.S. at 600-01.
12
Id.
13
28 C.F.R. § 35.130(b)(7).
14
The ADA’s integration mandate applies where a public entity administers its programs in a way that
leads to unjustified segregation of people with disabilities. See 28 C.F.R. § 35.130(d). A public entity may
violate the ADA’s integration mandate when it: (1) directly or indirectly operates facilities and or/programs
that segregate people with disabilities; (2) finances the segregation of people with disabilities in private
facilities; and/or (3) through its planning, service system design, funding choices, or service
implementation practices, promotes or relies upon the segregation of people with disabilities in private
facilities or programs. 28 C.F.R. § 35.130(b)(1)-(2).
15
Olmstead, 527 U.S. at 607; 28 C.F.R. § 35.130(b)(7).
16
See, e.g., Pashby, 709 F.3d at 323-24; Radaszewski, 383 F.3d at 609 (“[A] State may violate Title II
when it refuses to provide an existing benefit to a disabled person that would enable that individual to live
in a more community-integrated setting.”); Messier v. Southbury Training Sch., 562 F. Supp. 2d 294, 344-
45 (D. Conn. 2008); Disability Advocates, Inc. v. Paterson, 598 F. Supp. 2d 289, 335-36 (E.D.N.Y. 2009)
(“Where individuals with disabilities seek to receive services in a more integrated setting—and the state
already provides services to others with disabilities in that setting—assessing and moving the particular
plaintiffs to that setting, in and of itself, is not a ‘fundamental alteration.’”).
17
Olmstead, 527 U.S. at 605-06; Brown v. District of Columbia, 928 F.3d 1070, 1084 (D.C. Cir. 2019).
4
1. The Department of Health and Senior Services (DHSS): DHSS licenses and oversees
about 500 nursing facilities located across the State. DHSS’s Adult Protective Services
(APS) investigates claims of abuse and neglect of adults. Based on APS investigations,
DHSS files petitions—formal requests sent to a judge—to place adults with mental
health disabilities under guardianship.
2. The Department of Mental Health (DMH): DMH, through its Division of Behavioral
Health, designs, oversees, and provides targeted funding for, the State’s mental health
services. DMH also files petitions to put adults with mental health disabilities under
guardianship: and
3. The Department of Social Services (DSS): DSS houses Missouri’s Medicaid agency, MO
HealthNet. MO HealthNet funds both nursing facility stays and Medicaid-billable
community-based mental health services.
All three agencies are involved in running Missouri’s Preadmission Screening and Resident
Review (PASRR) system. PASRR is used to determine the appropriateness of nursing facilities
for people with mental health disabilities.
B. Missouri oversees and funds a network of community-based mental health providers
Missouri primarily provides community-based mental health services to Medicaid-enrolled
individuals through 27 regional providers who contract with and are overseen by DMH.
DMH
also contracts with 11 affiliated providers who offer additional services in each region, and with
two organizations that work with the regional providers to answer crisis calls. All of the regional
providers and three of the affiliated providers are Certified Community Behavioral Organizations
(CCBHOs).
18
CCBHOs get a daily rate for services they provide to people with mental health
disabilities and are required to offer a minimum bundle of services defined, in part, by the State.
Key services that enable community integration and are available through some or all of these
providers include: housing services, Assertive Community Treatment, supported employment,
peer support, crisis services, and case management.
19
Assertive Community Treatment (ACT)
18
CCBHOs are also called Certified Community Behavioral Health Clinics (CCBHCs). CCBHOs must
provide (or arrange for a Designated Collaborating Organization to provide) a set of required services.
They are also expected to quickly connect people to those services. See Certified Community Behavioral
Health Clinics (CCBHCs), Substance Abuse and Mental Health Services Administration [SAMHSA],
https://perma.cc/4UNY-2RWH
(Apr. 24, 2023). CCBHOs get Medicaid payments for the services they
provide using a bundled daily Prospective Payment System that accounts for the cost of providing
services. Certified Community Behavioral Health Clinics Demonstration Program: Report to Congress,
2018, Dep’t of Health & Human Servs., Office of the Assistant Sec’y for Planning & Evaluation (Sept.
2019),
https://perma.cc/MJ3Y-L4L3. Missouri was one of the first states to begin transitioning to CCBHOs.
Certified Community Behavioral Health Clinics (CCBHCs), Mo. Dep’t of Mental Health,
https://perma.cc/BF3Q-M5VQ (last visited Jan. 5, 2024). For State Fiscal Year 2023, the daily rate for
CCBHOs providing community-based mental health services to an individual was between $204.80 to
$304.91.
19
Some in the State use “Community Psychiatric Rehabilitation” or “CPR” as a shorthand for case
management. CPR is also an umbrella term that can describe the array of mental health services
5
and housing services are the two services most needed by adults with mental health disabilities
to prevent nursing facility admission and support transition back to the community in Missouri.
ACT is an intensive service where a team of healthcare workers support an individual by
providing them mental health treatment and services to help with housing, employment, and
other basic needs. Services are provided in the person’s home and in the community.
20
Housing
services, including Permanent Supportive Housing, are services to help an individual with
getting and maintaining a place to live.
21
These services enable people who might otherwise be
unnecessarily institutionalized to live, work, and participate in their communities. Missouri
acknowledges that this array of services can prevent unnecessary institutionalization. But it
does not ensure people are connected to these supports to prevent nursing facility admissions
or to enable transitions out of nursing facilities.
C. Missouri uses guardianships for people with mental health disabilities
Guardianship is a process in which a court appoints someone to make decisions for a person
found to be incapacitated. This often includes decisions about the person’s health and where to
live. When an adult with a mental health disability is not following the recommended treatment
or when there is difficulty identifying services for them, a frequently used strategy in Missouri is
to petition for guardianship and/or conservatorship. An appointed guardian then manages care
for the person and has authority to make decisions for them. The guardian may be a family
member or public administrator. Public administrators are county officials that are appointed as
guardians for adults when there is no adult relative suitable to the court and willing to serve as
guardian.
22
Unless a request to terminate a guardianship is made to the judge and the judge
grants it—an event that is rare in Missouri—guardianships run until the person under
guardianship dies. The result is
that thousands of adults with mental health disabilities
in
Missouri have been placed under and stay in guardianships.
Guardianships in Missouri tend to permit the guardians to make all decisions for the individual
under guardianship, including choices about where to live. According to Missouri law, if a person
is found to lack the capacity necessary to manage their “essential requirements for food,
clothing, shelter, safety
or other care so that serious physical injury, illness, or disease is likely
to occur” a guardian or limited guardian may be appointed.
23
If a person is found to lack the
capacity necessary to manage their “financial resources” a conservator or limited conservator
provided by DMH-contracted providers to people with mental health disabilities. These programs are
coordinated through case management, which is one of the services under the CPR umbrella.
20
Assertive Community Treatment: Building Your Program, SAMHSA 5-6 (2008), https://perma.cc/B38V-
V42H.
21
Permanent Supportive Housing, SAMHSA https://perma.cc/K5H3-BBY4 (last visited Jan. 5, 2024).
22
See Mo. Rev. Stat. § 475.050(2) (2022) (“The court shall not appoint an unrelated third party as a
guardian or conservator unless there is no relative suitable and willing to serve or if the appointment of a
relative or nominee is otherwise contrary to the best interests of the incapacitated or disabled person.”);
Mo. Rev. Stat. § 473.730 (2022) (defining public administrators). All public administrators in Missouri are
elected, with the exception of Jackson County, St Charles County, and the City of St Louis where they are
appointed by a court. Mo. Rev. Stat. § 475.050(2) (2022).
23
See Mo. Rev. Stat. § 475.075(11) (2022).
6
may be appointed.
24
Full guardianships together with full conservatorships—where the person
loses all of their decision-making rights—are used more frequently than limited guardianships
and/or conservatorships in Missouri. Because guardianships and conservatorships usually go
together for this population, in this report, the term guardianship will be used to refer to both
guardianship and conservatorship.
PEOPLE WITH MENTAL HEALTH DISABILITIES ARE UNNECESSARILY PLACED IN
NURSING FACILITIES AND UNDER GUARDIANSHIPS
Thousands of adults with mental health disabilities in Missouri are institutionalized in nursing
facilities that segregate them from their communities. Many are also under guardianship with
public administrators, who have reluctantly become a key part of Missouri’s system for serving
adults with mental health disabilities. These adults often are young, have lower physical care
needs, and spend longer in nursing facilities than nursing facility residents without mental health
disabilities. A significant proportion of these adults are concentrated in a small number of
Missouri’s nursing facilities. Despite this, adults with mental health disabilities are appropriate
for and do not oppose receiving community-based mental health services.
A. Nursing facilities are institutions that segregate adults with mental health disabilities
from the community
Missouri’s nursing facilities are segregated institutions. They are highly restrictive and controlled
settings that isolate and segregate residents by severely limiting or entirely cutting off their
relationships with loved ones and their community, and preventing them from interacting with
non-disabled people. This is especially evident at nursing facilities where many of the residents
have a mental health disability. Nursing facility stays also limit residents’ ability to pursue an
education and jobs and keep them from participating in cultural events. All of these are
hallmarks of a segregated institution.
25
People with mental health disabilities living in nursing facilities
are restricted from engaging in
their communities.
“My
son
had
a
life
before
they
took
him
there
and
now,
he
has
nothing,”
said
the
mother
of
Kelvin,
an
adult
with
a
mental
health
disability
currently
living
in
a
nursing
facility.
Kelvin
loved
being
outside
and
wanted
to
be
a
forest r
anger.
Now
he
lives
in
a
locked
unit
of
a
nursing
facility
where
he
has
only
recently
started
being
allowed
to
go
outside.
Many nursing
facilities
are locked, and some have locked wings segregating adults with mental health
disabilities away from other residents. Residents in these locked facilities or units, like Kelvin,
generally cannot leave without permission. Ciara,
who lived at three different nursing facilities,
said at one facility she couldn’t even travel to activities in another building within the nursing
facility.
Elijah, who has spent 11 years in nursing facilities, said at some facilities he wasn’t even
24
Id.
25
See Thorpe v. District of Columbia, 303 F.R.D. 120, 125 n.7 (D.D.C. 2014) (in a matter involving an
Olmstead claim for unnecessary segregation in nursing facilities, identifying cases that brought similar
claims); Conn. Office of Prot. & Advocacy for Persons with Disabilities v. Connecticut, 706 F. Supp. 2d
266, 276-277 (D. Conn. 2010) (denying motion to dismiss Olmstead claim in case involving plaintiffs
confined to nursing facilities); Joseph S., 561 F. Supp. 2d at 286-87, 293 (denying motion to dismiss
Olmstead claim where the defendant funded nursing facility placements); see also 42 U.S.C. § 1395i-3(a)
(the Social Security Act defining skilled nursing facilities as institutions).
7
Guardian Imposed
Limitations
•
No
telephone privileges
•
No
mail
•
Resident
not
allowed
to
go
off
the unit
•
Resident allowed
to
go
off
the
unit
for
20 minutes 3 times a
day
•
No
phone
or
mail restrictions
•
Resident
is
al
lowed
to
go
outside 1 hour per day
•
Resident
not
a
ll
owed
to
get
phone
ca
ll
s from mother
•
-
OS
P- with approved
responsible
pa
r
ty
•
Resident only allowed
to
call
L
ega
l Guardian
on
F
ri
days
•
Resident may smoke
independently
•
Resident may
go
to
store 3
times per week
•
Resident may
wa
lk
to
gas
station 3
days
pe
r week
with
staff
•
Resident own Responsible Party
allowed to leave his assigned hallway. One nursing facility told us it only allows residents to go
outside with guardian authorization. Alan missed his daughter’s graduation and did not get to
see the birth of his “grandbaby.” The nursing facility also keeps him from running simple
errands: “I ask if I can go to [the] store, and they don’t let me,” he said.
Residents also have difficulty communicating with loved ones. At one facility we visited,
residents can only use the phone on Wednesdays during a specific hour and a half block. Calls
can only last up to 10 minutes, and people can only make calls with guardian authorization.
26
A
resident at another nursing facility said she also has limited availability to use the phone and is
unable to call in for prayer with her community. Often people cannot see their families in person,
because adults with mental health disabilities are frequently placed in facilities that are far from
their homes and loved ones.
Several people we spoke to explicitly compared nursing facilities to jails and prisons due to the
lack of freedoms available to residents. Pamela’s mother said her daughter told her living at a
nursing facility was “like being held in prison against her
will.” Nursing facility residents with mental health disabilities
have little choice over their day-
to-day lives, including their
hygiene, activities, food, clothes, and even where they can
physically go within the nursing facility. Residents have little
privacy, with most facilities placing them in shared rooms.
27
Residents’ behaviors are closely monitored and controlled.
They must obey facility staff’s instructions, or face
punishments. Punishments include losing access to the
phone or internet, being restricted to their room, being
moved to a more restrictive area, or not being allowed to
smoke.
When a person with mental health disabilities is under a
guardianship, their experience in a nursing facility is even
more isolating. Nursing facilities afford guardians the option
to limit a wide variety of activities, including activities (like
their communications) that Missouri law does not allow
guardians to restrict. The chart on this page is from a
nursing facility document that shows the limitations that the
facility allows guardians to impose. Angela, a nursing
facility resident under a guardianship, told us: “I think
prisoners have more rights than a person under
guardianship has. Anything I do or have pleasure in, like
smoking, can be taken away [at] the whim of my guardian.”
26
This is despite a Missouri statute that expressly provides people under guardianship the right to
“communicate freely and privately with family, friends, and other persons other than the guardian[.]” Mo.
Stat. Ann. § 475.361.
27
DMH recognizes that significant numbers of shared rooms are associated with more restrictive settings.
8
B. Thousands of adults with mental health disabilities ar e living in Missouri’s nursing
facilities
Missouri has a high proportion of adults with mental health disabilities in its nursing facilities and
relies on nursing facilities for people with mental health disabilities to a greater extent than all
but a few states. It also has a few dozen facilities with highly concentrated populations of people
with mental health disabilities. These people are on average younger, have fewer nursing care
needs, and stay in nursing facilities longer, than other nursing facilities residents. The facts
show that Missouri is using nursing facilities to serve the gap created by the inadequate
community-based mental health services in the State.
Missouri places a higher percentage of adults with bipolar disorder or schizophrenia in nursing
facilities than almost any other state. From 2011 to 2021, Missouri nursing facilities consistently
had between the second and third highest
percentage of residents with schizophrenia
or bipolar disorder in the nation.
In March 2023, there were 3,289 Medicaid-
eligible adults with mental health
disabilities in Missouri’s nursing facilities
who had been there for at least 100 days
with Alzheimer’s or dementia
Without excluding those with Alzheimer’s
and dementia, there were 6,179 such
adults.
Adults w
3,289
ith mental health disabilities in Mis
souri’s
and who did not have a co-occurring
nursing facilities for 100+ days, excluding those
diagnosis of Alzheimer’s or dementia.
28
29
30
To calculate this number, we considered a person to have a mental health disability if they were in at
least one of these four categories: 1) diagnosed with schizophrenia; 2) diagnosed with bipolar disorder; 3)
entered the nursing facility from a psychiatric hospital; or 4) was found to have a “serious mental illness”
through the PASRR process. PASRR is explained on pages 35-36 below.
28
29
Some people enter nursing facilities for short, rehabilitative stays. A short-term stay is generally
considered to be 100 days or less.
30
Given the differences in service needs that people with Alzheimer’s or dementia may have from those
without co-occurring diagnoses, our investigation focused on people with mental health disabilities who
do not also have those co-occurring diagnoses. This does not mean that adults with Alzheimer’s or
dementia who have mental health disabilities are categorically unable to benefit from the remedies
described on pages 39-42 below.
9
Table 1: Missouri Nursing Facility Population
(Estimated Total Residents)
6,000
4,889
4,993
4,842
4,636
4,452
4,520
5,000
4,126
4,186
3,809
3,552
4,000
3,354
3,180
3,203
3,074
2,906
2,915
2,878
2,939
2,796
2,646
3,000
2,420
2,291
2,000
1,000
0
2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022
Persons with Schizophrenia Diagnosis Persons with Bipolar Diagnosis
The number of adults with mental health disabilities in nursing facilities has steadily increased
just about every year since 2012. For example, Table 1 below shows the growth in the
population of adults with just bipolar disorder and schizophrenia diagnosis—two diagnoses that
are tracked in nursing facility data nationally. In 2022, Missouri institutionalized around 49%
more people with a schizophrenia diagnosis and around 40% more people with a bipolar
disorder diagnosis in nursing facilities than it had in 2012. In a similar time period (April 1, 2010
to July 1, 2022) Missouri’s population grew by only 3.1%.
While the population of nursing facility residents with mental health disabilities has increased,
Missouri has decreased its population of nursing facility residents without mental health
disabilities. Because the total nursing facility population has been stable through this time, this
has led to an increase in the proportion of residents who have mental health disabilities since
2011. For example, Table 2 below shows how the proportion of adults with schizophrenia or
bipolar diagnoses in Missouri nursing facilities has grown almost every year over the last ten
years, mirroring the trend seen in Table 1.
Table 2: Missouri Nursing Facility Population
(Percentage of Residents)
18.0%
15.3%
14.9%
16.0%
14.3%
13.5%
12.9%
14.0%
12.4%
11.2%
11.5%
12.0%
10.3%
9.8%
9.7% 9.7%
9.2%
9.2%
8.8%
10.0%
8.0%
8.1%
8.0%
7.6%
7.2%
6.7%
8.0%
6.3%
6.0%
4.0%
2.0%
0.0%
2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022
Persons with Schizophrenia Diagnosis Persons with Bipolar Diagnosis
10
1. Adults with mental health disabilities are concentrated in a small number of
nursing facilities
Most adults with mental health disabilities
living i
n Missouri’s nursing facilities are
concentrated in a small number of nursing
facilities. As of March 2023, 50% of
nursing facility residents with mental
health disabilities (excluding those with a
co-occurring diagnosis of Alzheimer’s or
dementia) who had been in the nursing
facility 100 days or more lived in just 39 of
Missouri’s 500 nursing facilities.
The
map on this page shows the 10 High
Volume Facilities with the highest number
of these residents.
31
In 2021 at 10 of the 39 High Volume
Facilities, adults with bipolar disorder or
schizophrenia diagnoses were between
82% and 90% of the total resident
population. And High Volume Facilities
are large. In 2023, the total number of
res
idents at these facilities ranged from
47 to 225, with an average of 95 residents. Staff at High Volume Facilities told us their nursing
facilities specialize in adults with mental health disabilities. One called their nursing facility a
“psych facility.”
2. Adults with mental health disabilities generally have lower nursing care needs
than other people in Missouri’s nursing facilities
Many nursing facility residents in Missouri have low physical care needs. In a 2019 report from
Missouri’s Department of Social Services, the State acknowledged it had a significantly higher
32
Top 10 High Volume Facilities, by Number of
Residents with Mental Health Disabilities
Top 10 High Volume Facilities, by Number of
Residents with Mental Health Disabilities
31
We refer to these 39 nursing facilities as the High Volume Facilities. Nursing facility residents with
mental health disabilities who are Black are more likely than their white counterparts to live in a High
Volume Facility.
32
One of the High Volume Facilities on the map, Northview Village, closed abruptly in December 2023,
displacing 170 residents. A significant number of the St. Louis facility’s residents had a mental health
disability. See Jim Salter, Heather Hollingsworth, Largest Nursing Home in St. Louis Closes Suddenly,
Forcing Out 170 Residents, Associated Press (Dec. 18, 2023), https://perma.cc/4JXU-WXGW
. News
reports at the time indicated many residents were abruptly moved to other nursing facilities, however at
least one person was unaccounted for several weeks after the closure. Id., Anthony Raphael, The
Aftermath of a Nursing Home Closure: A Search for Frederick Caruthers, Medriva (Jan. 5, 2024),
https://perma.cc/6GTL-V7D9.
Another one of the High Volume Facilities on the map, Levering Regional Health Care Center, announced
its closure in May 2024. Zach Richardson, Levering Regional Health Care Center announces permanent
closure, KHQA (May 15, 2024), https://perma.cc/SK6D-CCEF. See footnote 62 below.
11
percentage of nursing facility residents with low care needs (24% vs. the national average of
11%) than other states.
The State recognized that this suggested there were opportunities for
more nursing facility residents to be served in the community.
This is still the case: according
to a report based on 2021 data, Missouri had a higher percentage of nursing facility residents
with low care needs (25.3%) than any other state.
33
34
The national average in 2021 was 8.8%.
36
Adults with mental health disabilities are even more likely to have low physical care needs than
other nursing facility residents in Missouri. We reviewed the records of a sample of adults with
mental health disabilities in nursing facilities across the State. Less than half of the people we
reviewed needed personal care or help with daily living, despite living in a nursing facility. The
majority of people with mental health disabilities (and without dementia or Alzheimer’s) in
nursing facilities needed no help with activities like eating, toilet use, transferring, and bed
mobility. Those living in High Volume Facilities were significantly less likely to need personal
care or help with daily living than people in other facilities. The fact that adults with mental
health disabilities in nursing facilities in Missouri tend to have relatively low need for nursing
care highlights why nursing facilities are not appropriate for these individuals.
35
3. Adults with mental health disabilities are generally younger than other
people in Missouri’s nursing facilities
Many adults with mental health disabilities in nursing facilities are young. As shown in the bar
graph on the next page, 49% of adults with mental health disabilities in Missouri nursing
facilities are under the age of 65 more than two and a half times the national rate (17.59%).
37
The average age in the sample of adults with mental health disabilities we reviewed was 53; by
contrast, the average age all of the State’s nursing facility residents is 75. The average age of
residents with mental health disabilities in the 10 High Volume Facilities with the largest
numbers of residents with mental health disabilities was 47. We spoke with over two dozen
people with mental health disabilities, or their loved ones, who were first admitted to a nursing
facilities in their 20s and 30s. “To be in a nursing home at 33, I could not believe that,” one told
us.
38
33
Rapid Response Review – Assessment of Missouri Medicaid Program Final Report, Mo. Dep’t of Social
Servs. 44 (Feb. 11, 2019), https://perma.cc/W4X5-B6V6.
34
Id.
35
NH Residents with Low Care Needs, AARP, (2023), https://perma.cc/79ET-4EEU.
36
Id.
37
A study reviewing research from 2000 to 2020 on nursing facility care for adults with mental health
disabilities found that: “[n]ursing homes (NH) and other institutional-based long-term care settings are not
considered an appropriate place for the care of those with serious mental illness, absent other medical
conditions or functional impairment that warrants skilled care.” See Taylor Bucy, et al. Serious Mental
Illness in the Nursing Home Literature: A Scoping Review, Gerontology and Geriatric Medicine (May 9,
2022), available at https://journals.sagepub.com/doi/full/10.1177/23337214221101260
.
38
This includes adults with mental health disabilities who have co-occurring diagnoses, such as
Alzheimer’s and dementia.
12
4. Adults with mental health disabilities generally stay institutionalized longer than
other people in Missouri’s nursing facilities
Despite their relative youth and low physical care needs, adults with mental health disabilities
stay institutionalized for significant lengths of time. On average, adults with mental health
disabilities have been in their current nursing facility for nearly 3.5 years. Because this data
does not include time spent at any previous nursing facilities, it is likely an undercount. We
spoke with over two dozen people with mental health disabilities, or their loved ones, who
transferred from one nursing facility to another. At least five of them had spent more than 9
years in nursing facilities, with one spending around 18 years.
Public administrators, loved ones, and other stakeholders have long noticed what the data
confirms: Adults with mental health disabilities, including young people, are being placed in and
staying in nursing facilities not for skilled nursing care, but because of their mental health
disabilities.
C. Guardianship is a key feature of the State’s system of caring for adults with mental
health disabilities and leads to their unnecessary segregation in nursing facilities
The State routinely relies on guardianships, particularly under public administrators, for adults
with mental health disabilities who are harder to engage in treatment. A
nd guardianship, in
turn, serves as a pipeline to unnecessary institutionalization.
39
with Mental Health Disabilites
in
Missouri's Nursing Facilities by Age
--
~1~,4~
1s
--
--
Ages90+
Ages
60-64-
930 647
-Ages
80-89
Ages
50-59
-
1,413
-Ages
70-79
1,014
Ages40-49 -
517
413
917
Ages
30-39
-
Ages
19-29
-
183
-Ages
65-69
Under65
65 & Older
39
The guardianship and conservatorship system in Missouri is a public “service, program, or activity”
covered by Title II of the ADA. See Bahl v. Cty. Of Ramsey, 695 F.3d 778, 787 (8
th
Cir. 2012) (citations
omitted) (interpreting the “services, programs, or activities” language in the ADA to encompass “anything
a public entity does.”); see also 28 C.F.R. Pt. 35, App. B (“title II applies to anything a public entity
does.”).
13
■
Involuntarily committing a person to a psychiatric hospital is a severe restriction of their liberty.
As a result, to commit a person longer than 96 hours in Missouri, the judge must find by clear
and convincing evidence that the person “presents a likelihood of serious harm” to themself or
others.
Any further commitment beyond 21 days requires a new hearing.
In contrast, people
under guardianship can have their liberty restricted in almost the same manner—by being
locked in a nursing facility and forced to take medication against their will—indefinitely. This is
because, in contrast to commitments, there is no requirement for automatic additional hearings
to re-evaluate the need for guardianship.
42
Guardianships in Missouri are imposed by a judge,
with the same “clear and convincing evidence” requirement as involuntary commitments.
40 41
But
attorneys report that most guardianship petitions are not challenged and note that procedural
protections are not meaningfully implemented. More than 60% of the nursing facility residents in
the sample we reviewed have guardians, and of those individuals nearly all were placed in the
facilities by their guardians. Less than half reported receiving any kind of community-based
mental health services before their guardian placed them in a nursing facility.
1. Thousands of adults with mental health disabilities are under guardianship in
Missouri
In November 2021, a public administrator testified before the Missouri House Committee on
Mental Health Policy Research that the percentage of people under guardianship with her office
who had “mental health issues and concerns” had increased from about 20% in January 2003 to
about 65% in November 2021. Data from the Missouri Association of Public Administrators
(MAPA) confirm this is a statewide trend. Based on a 2020 survey of at least 92 public
administrators, MAPA found that adults with a primary diagnosis of mental illness or behavioral
health issues constituted 33% of respondents’ caseloads.
This means over 3,000 adults with mental health
disabilities are under guardianship with a public
administrator. In some counties, the trend is even more
striking. Public administrators told us that between 50 to
almost 100% of their caseloads are people with mental
health disabilities. A public administrator from a county
that includes a major city shared their estimated caseload
with DOJ, displayed on this page as a pie chart.
Public
administrators’ “[c]aseloads are evolving to include a
greater number of cases with younger individuals,
43
85%
15%
Caseload of Public
Administrator for County
that includes a Major City
(700 Total Clients)
595 Have
Mental Health
Disabilities
105 Do Not
40
See Mo. Rev. Stat. § 632.330, 632.335.
41
See Mo. Rev. Stat. § 632.340.
42
See Mo. Rev. Stat. §475.082. Although guardianships require an annual review of documentation, no
hearing is required.
43
See Mo. Rev. Stat. §§ 475.075(9), (10).
14
including an increase in those with mental and behavioral health needs.”
44
2. The State seeks guardianships directly and promotes their use
Despite acknowledging that guardianships are “very restrictive” and not a substitute for mental
health care, the State itself files guardianship petitions with the purpose of involuntarily enrolling
people with mental health disabilities in care. It does this primarily through DMH, DHSS Adult
Protective Services (APS), and the Missouri Attorney General’s Office. From July 2018 to May
2023, Missouri filed petitions to place at least 360 adults with mental health disabilities under
guardianship.
45
The State also promotes the use of guardianship by failing to (1) hold providers responsible for
engaging people in intensive community-based services and (2) train its staff and the staff of
providers it contracts with on alternatives to guardianship approved under Missouri law, like
Supported Decision-Making. Supported Decision-Making is a flexible tool that allows a person
with a disability to appoint people they trust to give them advice and support them in making
their own decisions.
46
Instead, the State’s website lists guardianship as a tool for people with
mental health disabilities.
3. Guardianships are the primary tool in Missouri for serving people who have not
been easy to engage in treatment
Missouri files guardianship petitions for people who are considered noncompliant with
treatment. DMH and APS staff prepare summaries describing why guardianship is
recommended in each case. We reviewed the summaries for about 100 of these people. The
documents highlight the State’s use of guardianship as the primary response to people who do
not engage in treatment. These summaries, along with the statements of a Missouri state
official, confirm that Missouri is filing guardianships without first providing intensive community-
based services like ACT and peer support—which could eliminate the need for a guardianship—
and that Missouri is not considering other alternatives like Supported Decision-Making, before
resorting to guardianship. Loved ones and providers struggling to connect adults with mental
health disabilities to needed services and supports are following the State’s example. A
common approach in Missouri is, thus, a guardianship and nursing facility combination that
forces people into restrictive, segregated treatment settings. Combining guardianships and
nursing facility placement creates the functional equivalent of involuntary and indefinite
commitment.
In a
large majority of the summaries for cases
initiated by the State that
we reviewed,
noncompliance with medication and treatment was noted as
a primary
reason why a
guardianship was
needed.
For example, Missouri’s files explained that Lilian does
not like her
medications because they make her drowsy and
lethargic.
The
APS caseworker did not
44
Mo. Ass’n of Pub. Admins., Missouri Public Guardianship Report, Mo. Dep’t of Mental Health 17 (Apr.
20, 2020), https://perma.cc/WDF4-8SYY.
45
This does not include petitions filed for adults who are aging out of foster care or people who have
been found “not guilty by reason of insanity” or “incompetent to stand trial” in a criminal case.
46
Missouri’s Supported Decision-Making law is described below on page 20.
15
recommend that Lilian’s prescriber work with her to find medications she is comfortable with, or
otherwise engage her in treatment to promote recovery. Instead, the APS worker recommended
a guardianship because she was concerned Lilian “will get off her medication again and put
herself in dangerous situations again.”
Though some case summaries state that the adult with a mental health disability had been
connected to a DMH contracted provider before, they did not indicate that the State had worked
with providers to identify other community-based services that m ight meet the individual’s
needs, or held providers responsible for i nadequate intensity of services. This was confirmed by
a State offi cial who said APS does not require a person with a mental health disability to be
connected to services before a guardianship petition can be filed and does not have a
mechanism for w orking with DMH to hold providers accountable. In one example, Missouri filed
a guardianship petition for a person the APS worker acknowledged had not been connected to
needed community-based services, including crisis services. Rather than holding its provider
accountable for fai ling to respond to the APS caseworker’s requests for s ervices and working
with the provider to ensure Julia got intensive services in the community, the State fi led for
guardianship. The guardian then approved Julia’s placement in a nursing facility.
Studies and experience show that engaging people who are skeptical of or resistant to mental
health treatment requires building a strong therapeutic relationship, actively involving the person
in decisions about their own care, providing practical help with things like housing and finances,
and not focusing solely on medication adherence. As one state official admitted, Missouri has
services that, if appropriately and consistently provided, could achieve this goal.
47
But
guardianship is often used instead. For example, one woman we met entered guardianship and
a nursing facility
in her early 20’s after she did not get assertive engagement. Pamela
is a 31-
year-old whose mother describes
her as “amazing, bright, funny, gifted.”
Pamela likes music,
dance, and gymnastics.
But she has not enjoyed
these hobbies for 12 years because Missouri
failed to provide her the services she needed to stay
in the community. This
led
her family to
turn to guardianship and her public
administrator to place her in a nursing facility. Before
her
institutionalization, Pamela cycled in and out of psychiatric hospitals and at times did not want to
take medication. Her family had trouble getting her connected to mental health care. As a result,
when she was 21, her father filed a petition to have her placed under
guardianship and the
public administrator was appointed. Instead
of identifying a provider who would assertively
engage Pamela to encourage her participation in treatment, the public
administrator placed
Pamela
in a nursing facility.
4.
Heavy caseloads lead guardians to resort to using nursing facilities
rather than
identifying and connecting people to community-based alternatives
The Missouri Association of Public
Administrators have identified one guardian for every
20
people under guardianship
as the national standard caseload for professional guardians.
48
Yet
47
A Missouri state official agreed community-based mental health services offered by DMH’s providers
could help someone at risk of guardianship. The official said DMH contracted providers should make
additional efforts to engage those individuals, including by sending staff out to find and connect them to
services, before resorting to guardianship.
48
Mo. Ass’n of Pub. Admins., Missouri Public Guardianship Report, Mo. Dep’t of Mental Health 4 (Apr.
20, 2020), https://perma.cc/WDF4-8SYY.
16
public administrators in Missouri average a caseload of 91 people, and more than one third of
public administrators work without staff. The Missouri Association of Public Administrators
c
alls some public administrators’ caseloads “dangerously high.” For example, one office
manages over 715 cases between four staff members. Another public administrator, who said
she has begged for more full time staff, told us she was so frustrated recently she tried to
resign. Two public administrators declined interviews with us due to being overburdened with
their workload.
High caseloads and low staffing mean little time to support each of the people under
guardianship. We spoke with nursing facility residents who told us they went years without
seeing their guardians and that guardians do not return phone calls, or are otherwise
unavailable to speak with them. Angela, who lives in a nursing facility, told us that she could not
reach her public administrator directly and that at one point her phone number was blocked by
the administrator’s office. Orlando’s loved one told us Orlando has never had a face-to-face
conversation with his public administrator and he is only allowed to call her office on Thursdays.
He has been at the nursing facility his guardian placed him in for two and half years. A public
administrator lamented: “These people deserve so much more than what we give them.”
High caseloads and low staffing also create an incentive to turn to low maintenance options like
nursing facilities. For example, one public administrator admitted she hates keeping so many of
the people in her care “locked up” but she does not have the resources to manage care for
people in the community. Multiple State officials explained that public administrators may be
likely to turn to nursing facilities because many are locked facilities and provide the public
administrator with peace of mind. This is regardless of the actual safety or therapeutic value.
One of the State officials said: “I don't know if [the individuals living in the nursing facilities] are
safer. I can’t really say that. But . . . the guardian thinks they are safer because they cannot
leave.”
As a result, in Missouri, guardianship for people with mental health disabilities and placement in
nursing facilities go hand in hand. When asked how many residents have a guardian, a nursing
facility administrator told us: “It’s easier to say how many don’t have guardians.” Sixty-two
percent of the adults with mental health disabilities living in nursing facilities interviewed for our
review had a guardian. Of those, 80% had a public administrator as their guardian. At the High
Volume Facilities where adults with mental health disabilities are highly concentrated, that
number was even higher. Seventy-three percent of the residents we interviewed had a
guardian, and of those, 84% had a public administrator as guardian.
Not only is Missouri aware of public administrators’ reliance on nursing facilities, it also actively
pursues guardianships so that the guardians will place adults with mental health disabilities,
who would otherwise not consent to it, in nursing facilities. In several APS summaries, the ability
to place or keep someone in a nursing facility against their will was listed as a reason why a
guardianship was needed. The image below is an example of one such court summary. A State
official confirmed that the State uses guardianships “probably pretty often” to enable placement
in and continued stay in nursing facilities for people with mental health disabilities.
49
49
Id.
17
Department
of
Health & Senior Services
Division
of
Senior Services
17
04.48
Exhibit A
3.
In your opinion, what would be the consequences
if
the guardianship/conservatorship were delayed?
- is currently in a skilled nursing home,
how
ev
er
witl1
• being her
own
guardian
sh
e could
lea
ve
at any
time
which
would
be
delrirnental
to
•
0
MISSOURI'S
GUARDIANSHIP
TO
NURSING
FACILITY
PIPELINE
0
CYCLE
IN
AND
OUT
OF
PSYCHIATRIC
HOSPITALS
Missouri fails to
connect adults cycling
in
and
out
of
psychiatric
hospitals with
community-based
mental health services,
including services
proven to work for
individuals skeptical
of
or
resistant to care.
0
11
11
11
e
GUARD
I
ANSHIP
REQUESTED
IN
COURT
Instead, Missouri encourages
guardianships and initiates
hundreds itself, particularly for
people considered non-
compliant wi
th
treatment.
e
GUARDIANSHIP
GRANTED
&
RIGHTS
REMOVED
Thousands
of
adults wi
th
mental health
disab
il
ities are under guardianship with
a public administrator, which means
they have lost the ri
ght
to make their
own decisions.
0
CONFINED
IN
NURSING
FACILITY
As
of March 2023, there
were 3,
28
9 Medicaid-
eligible adults with
mental health disabilities
w
ho
had
been
in
Missouri's nursing
faci
lities 100+
da
ys and
did not
ha
ve a
co-
ocurring diagnosis of
Alzheimer's or dementia.
More than
ha
lf
had
a
guardian, with
the
vast
majority
ha
ving a public
administrator.
UNABLE
TO
FIND
COMMUNITY
BASED
SERVICES
Guardians
ha
ve trouble finding community-
based mental health
se
rvi
ces
to
meet t
he
needs
of people
in
their care. A public administrator
said apart from nursing faciliti
es
, "there's nothing
else; there's
[s
i
c]
ve
ry
little options
."
The medical director of a CCBHO described the pathway many adults with mental health
disabilities follow to enter nursing facilities this way: They cycle in and out of psychiatric
hospitals until they are appointed a guardian. Once they are appointed a guardian, “[t]hen that’s
kind of a sentence to be locked in a [nursing facility],” she said. The infographic below provides
a visualization of the guardianship to nursing facility pipeline that the State has encouraged and
participated in.
5. Adults with mental health disabilities living in Missouri’s nursing facilities
generally do not need guardianships
Guardians can and do require adults with mental health disabilities to reside in Missouri’s
nursing facilities. They also can and do block access to community-based services for adults
with mental health disabilities in Missouri’s nursing facilities. They exercise this control even
though nearly all of the adults in our sample who were under guardianship were able to “receive
18
and evaluate information” and “communicate decisions” when we met them.
Nearly all of them
understood our questions and were able to communicate their preferences and hopes for the
future; and explain the reasoning behind their preferences. More than half identified the areas
where they needed support to live in the community and manage their own affairs and what kind
of support they’d like to get, like help with groceries and medications. In the experience of our
experts, people with similar symptoms and treatment histories as the people in our sample can
engage in treatment and work with providers without having guardians manage their care or
activities.
Under Missouri’s own law, people who can receive and evaluate information, communicate their
wants and needs, and manage their own care and financial resources—with or without help
50
—
should not be under guardianship. During a training presented by its staff, the State
acknowledged that “[w]e all have the right to make poor decisions.” It warned that guardianships
are not a “magic[]” solution to get a person to take medication or keep them in a residential
setting. But in practice, in Missouri the determination of whether a person with a mental health
disability needs a guardian is not always based on the person’s ability to make and
communicate decisions. It may instead be based on whether the person seeking the
guardianship agrees with those decisions. For example, even though Lilian, described on pages
15-16 above, who the State labelled as “intelligent,” provided a rational explanation for why she
did not want to take her a particular medication—it made her feel drowsy and lethargic—a
primary reason why the State sought guardianship is because it disagreed with that healthcare
decision.
Guardianship is a blunt tool for addressing what is often a subtle challenge: due to the nature of
mental health disabilities such as bipolar disorder and schizophrenia, any incapacity caused by
the mental health disability is often temporary. Once the person is less symptomatic, their
capacity returns, but the guardianship does not automatically end, and is often effectively
permanent.
On paper, Missouri state law both provides a process to end guardianships
51
and requires
guardians to submit an annual review stating, among other things, if the guardianship is still
52
50
Mo. Stat. Ann. § 475.075(11) (“On the other hand, if the court finds that the capacity of the respondent
to receive and evaluate information or to communicate decisions is impaired to such an extent as to
render the respondent incapable of managing some or all of the respondent's essential requirements for
food, clothing, shelter, safety or other care so that serious physical injury, illness, or disease is likely to
occur, or that the capacity of the respondent to receive and evaluate information or to communicate
decisions is impaired to such an extent so as to render the respondent unable to manage some or all of
the respondent's financial resources, the court shall appoint a guardian or limited guardian, a conservator
or limited conservator, or both in combination.")
51
Mo. Stat. Ann. § 475.075(13) (“Before appointing a guardian or conservator, the court shall consider
whether the respondent's needs may be met without the necessity of the appointment of a guardian or
conservator, or both, by a less restrictive alternative including, but not limited to . . . Supported decision-
making agreements or the provision of protective or supportive services or arrangements provided by
individuals or public or private services or agencies . . . .”)
52
Mo. Stat. Ann. § 475.083.
19
needed. But public administrators and other stakeholders said that guardianships are
terminated very infrequently,
53
and that these annual reviews are largely a formality.
Rather than guardianship, we found most of the people in our sample would benefit from other
decision-making aid, such as Supported Decision-Making (SDM). In 2018, Missouri amended its
guardianship statute to include a requirement that the court consider SDM agreements before
appointing a guardian.
54
55
A SDM agreement is a tool that allows a person with a disability to
appoint people they trust to give them advice and support them in making their own decisions.
56
Nearly all the staff at DMH contracted providers and psychiatric hospitals we asked about SDM
were unfamiliar with it. This included those whose organizations actually file guardianship
petitions or recommend guardianship to families. This confirmed what several stakeholders—
two of whom are members of the group that developed the amendments—told us: the changes
have been put into effect inconsistently across the state. The Missouri Association of Public
Administrators (MAPA) stated in its report that “[public administrators] are too often assigned
before alternatives have been exhausted.”
A lack of familiarity and awareness of SDM and the
perception that these alternatives are difficult to do or impractical seem to be some causes for
why SDM has not been widely adopted. According to MAPA, public administrators “often do not
have the bandwidth for limited guardianship or supported decision-making, even when it is
preferable.”
57
In sum, with appropriate services, adults with mental health disabilities
living in Missouri’s
nursing facilities generally can receive and evaluate information, communicate their decisions,
and manage their own care. The imposition of guardianship despite this
prevents them from
doing so.
D.
Adults with mental health disabilities living in nursing facilities
could
instead
be
appropriately served in integrated settings
We interviewed a representative sample of the State’s
nursing facility
residents
58
with mental
health disabilities and reviewed their medical records. Based on that sample, we conclude that
59
53
Mo. Rev. Stat. § 475.082.
54
There is no meaningful centralized data available about the frequency of guardianships and/or
restorations.
55
See Mo. Rev. Stat. § 475.075(13)(4).
56
See Frequently Asked Questions, National Resource Center for Supported Decision-Making,
https://perma.cc/ME2W-59G7 (last visited Jan. 25, 2024). See also Supported Decision-Making,
Missouri's Working Interdisciplinary Network of Guardianship Stakeholders, https://perma.cc/CR4T-FQYG
(last visited Mar. 22, 2024).
57
See Mo. Ass’n of Pub. Admins., Missouri Public Guardianship Report, Mo. Dep’t of Mental Health 27
(Apr. 20, 2020), https://perma.cc/WDF4-8SYY.
58
See id. at 15.
59
We excluded residents with dementia, with Alzheimer’s, and with nursing facility stays of 100 days or
fewer, from this sample.
20
the vast majority of nursing facility residents with mental health disabilities are qualified and
appropriate for community-based services, including Assertive Community Treatment,
Permanent Supportive Housing, case management, peer support services, supported
employment, and crisis services. Residents’ medical records frequently cite impulse control and
other behavior management challenges as justification for not offering community-based
services, but these ar e issues that the services listed above can target. The people with mental
health disabilities we met in Missouri’s nursing facilities are similar to peopl e who are
successfully served in community-based settings in other states. P lacement in nursing facilities
is not necessary to provide personal care or help with daily living. Indeed, more than half of the
people in our sample, and about three quarters of the people sampled in the High Volume
Facilities, do not need any personal care or help with daily living. For people with mental health
disabilities who also need physical help for daily activities like bathing and cleaning, that help is
also available in the community through Medicaid. Thus, any physical care needs can likely be
appropriately addressed in integrated community settings.
These findings are consistent with conclusions of
both DMH staff and people working in nursing
facilities. A State official acknowledged to us that
there are people with mental health disabilities in
nursing facilities who are not in the most integrated
setting appropriate for them. Nursing facility
administrators also acknowledged that at least
some current residents did not need to live in their
facilities.
Some stakeholders explained that many nursing
facility residents with mental health disabilities are
appropriate for community-based placements but
are not given the opportunity because those
alternative placements are not readily available. A
public administrator who placed a person in a
nursing facility said she would want to move that
per
son to a Clustered Apartment (an individual apartment in a complex staffed by a DMH
provider), if one was available. Other public administrators explained that they placed adults
with mental health disabilities in nursing facilities not because they would get the treatment they
needed in those institutions, but because there was no other option. One public administrator
succinctly summarized: nursing facility placement is “a solution only because it’s the only
solution.”
Moreover, people with mental health disabilities in nursing facilities are not routinely receiving
mental health services beyond medication. Some High Volume Facilities have developed what
they describe as mental health programs even though they do not include any mental health
services. The programs are infantilizing, of low quality, not evidence-based, and lack structure.
Nevertheless, discharge may be tied to successful completion of the “programs”, which are
designed to last at least four years. George, who has lived in nursing facilities for eight and a
half years, said he has been in a program at his current nursing facility for three years: “I
should’ve already completed it. They haven’t told me how to pass. They don’t inform us about
much.”
When I lived
in
an
apartment, I didn't
take the best care of
myself-but
I'm
ready for a second
chance- nobody
seems willing
to
give
me
a second chance
."
-Alexandra
21
Public administrators, disability rights attorneys, an administrator of an ombudsman program,
nursing facility residents, and loved ones confirmed that nursing facilities provide few, if any,
mental health services beyond medication. “They don’t have any treatment for mental health,”
said Natasha, whose brother lives in a High Volume Facility. “All they do is pass out meds.”
Indeed, the extent of the mental health treatment offered at many nursing facilities is a
psychiatrist visit once every one to four months for medication management. A deputy public
administrator whose office has placed adults with mental health disabilities in nursing facilities
said that visits from a psychiatrist every three months are “not enough to give ongoing treatment
for mental illness.” A loved one of a resident captured the irony of Missouri’s unnecessary
reliance on nursing facilities: “If she is locked up because of mental health issues, it only makes
sense that she would be receiving mental health services, and she is not.” Without mental
health services, any symptoms or challenges that led to a nursing facility placement are unlikely
to be resolved,
s
o the practical effect is that people with mental health disabilities
in nursing
facilities
are
stuck indefinitely. Thi
s despite being appropriate for community-based services
aimed at recovery.
Ruth
was
institutionalized in nursing facilities
despite being qualified and appropriate for
community-based services,
but thrived once she was given community-based care. Ruth
experienced night terrors and psychosis
after
an abusive relationship
and was diagnosed with
schizophrenia. Ruth
said she was not offered community-based treatment, but if she had
been:
“[T]his never would have been as nasty as
it was. It would have been a whole different story. It
would have been completely different.”
Instead, her parents
filed a guardianship petition, and a
public administrator was appointed.
Rather than
engaging Ruth in community-based treatment,
the public administrator moved Ruth—who was in her
40s
and had no physical care needs—
into a nursing facility.
Treatment there largely consisted of medication. She spent at least two
and a half years
institutionalized in nursing facilities.
When she finally returned
to the community
after persistent self-advocacy,
she got therapy and case management. These services
enabled
her to enroll
in and graduate from college, connect with a
church, and develop
a network of
friends. She now lives in an apartment with her cat,
where she gets
housing supports. She told
us that living in a community-based setting “feels
like I have me back.” Ruth is
working on
becoming a clinical counselor.
60
60
Instead, nursing facilities can make recovery more difficult. One resident we met was 31-year-old
Amber, who has been in nursing facilities for 11 years. She likes being outside, reading, and watching
movies. She told us she wanted to enroll in a 12-step program for substance use disorder, but none was
available at the facility she is in.
22
E. Adults with mental health disabilities living in nursing facilities do not oppose
receiving services in integrated settings
1. People with mental health disabilities living in nursing facilities do not oppose
returning to the community
Nearly all the people in our generalizable sample of people with mental health disabilities in
nursing facilities said they wanted to r eturn to the community. One individual told us if he’d
known more, he would have fought his placement in a nursing facility “tooth and nail.” The
people we spoke to told us of their dreams
of freedom and shared the simple
moments of joy they’d experience if they
could leave their nursing facilities. For
example, Alice looks forward to being with
her family at the beach in California, and
having a picnic or barbeque. She added
that: “I’ve always wanted to go to a fair.”
Dorothy, who is 35, w ould like to have a
husband and children. She looks forward to
having her own apartment and enjoying
steaks, hot dogs, and fish. Elijah, a
resident of nursing facility for 11 years, told
DOJ: “Oh yeah, in a heartbeat. I’d fly
through that door and be the happiest little
ant in the world.” We asked the nursing
facility residents we visited: If a miracle
happened where your life was now exactly
as you wanted it, what would be different?
The textbox on this page shows quotes
from nursing facility residents with mental
health disabilities responding to that
question. They wished for nothing more
than to engage in everyday integrated life
activities, as envisioned by the ADA.
These preferences are well known. Public
administrators told us that most of their
clients with mental health disabilities do not
want to be in nursing facilities and that they
were placed there because no other
options were available. The operator of a
large nursing facility in Kansas City was
quoted in a newspaper as saying that
residents there because of their mental
health disability “don’t want to be here,” and that “[n]o one wants to have their loved one here.”
61
An administrator at a High Volume Facility told DOJ: “everybody asks to leave, every day.”
Asked: If a miracle happened where
your life was now exactly as you
wanted it, what would be aifferent?
"I'd
be
living in my own place
wi
th
a
social worker that could help
me
out."
- Colton
"I'd
be
out
on
my own. I'd see a lot of
my friends, travel to see my family
."
- Nora
Ideal day: Drink coffee, laundry,
clean, go into town, shop a little bit.
"The normal things that people do."
- Elij
ah
"I'd have a good apartment that wasn't
too many steps up and I'd have a
therapy pet, like maybe a goldfish or
something. That's i
t.
I'm simple
."
- Levi
Nursing facility residents with mental
health disabilities wished for nothing more
than to engage
in
everyday integrated life
activities, as envisioned by the ADA.
61
Joe Robertson, No place in system for severely mentally ill, so they’re locked away in nursing homes,
The Kansas City Star (May 7, 2017), https://perma.cc/U22C-6AP3.
23
It is not surprising that people do not oppose transitioning to integrated settings, particularly
given the conditions at some nursing facilities. For example, during our visits we noticed that a
wing of one facility smelled of raw sewage from a broken toilet.
Some had overwhelming smells
of cigarette smoke and sewage. Staff and residents of some facilities described drug use by
both staff and residents. There are resident-on-resident physical fights.
The State knows about
the concerning conditions at several High Volume Facilities, and multiple facilities serving this
population have been flagged because of concerns about conditions and treatment.
62
Several
residents interviewed by DOJ described their time in nursing facility as “hell.” One told us: “a
good chunk of me died in that” nursing facility.
A Missouri state official echoed this sentiment, saying, “If I had a mental illness and had to live
in a locked unit in a nursing home, I wouldn’t like that at all.”
1. Public administrators agr ee that adults with mental health disabilities do
not belong in nursing facilities
Public administrators we spoke with agree that people with mental health disabilities do not
belong in nursing facilities. Public administrators rely on nursing facilities because there are few
other options available in Missouri. As a public administrator who has clients with mental health
disabilities living in nursing facilities told us, apart from institutionalized care “there’s nothing
else; there’s [sic] very little options.” Some public administrators told us they tried to find
community-based placements for their clients but could not. Others said they would be open to
trying community-based services if they were available. Others admitted that they were not
familiar with the limited community-based options that do exist. But none of the public
administrators we spoke to opposed increasing community-based alternatives to nursing
facilities for the people they serve.
THE STATE COULD BUT DOES NOT USE EFFECTIVE COMMUNITY-BASED SERVICES
INSTEAD OF NURSING FACILITIES AND GUARDIANSHIP
As described above, a common response in Missouri to people with mental health disabilities
who have not successfully engaged in treatment is appointment of a guardian and placement in
a nursing facility. However, there are community-based services that are specifically targeted at
this population and are alternatives to this segregation. Missouri could, but has not, used these
services to prevent nursing facilities admissions.
A. Before their placement in a nursing facility, many adults with mental health
disabilities did not get intensive community-based mental health services
Abraham, who is in his late 20s, wants to work part time at a fast food restaurant and live in his
own apartment or trailer around Kansas City. Instead, he lives in a locked nursing facility over 6
hours away. Before his institutionalization, Abraham was unhoused and had multiple
hospitalizations, some of which were motivated by his need for shelter when it was cold.
62
Grace Kenyon, Problems with oversight, staffing contribute to low quality ranking of Missouri nursing
homes, Columbia Missourian (Jan. 3, 2024), https://perma.cc/T3FW-DW8Z. One such facility, Levering
Regional Health Center (a High Volume Facility), is closing down after it was terminated from participation
in Medicare and Medicaid in May 2024 after persistent failures to bring its conditions into compliance with
regulations. Most residents were moved to other nursing facilities.
24
Missouri did not provide Abraham with community-based services at the intensity necessary to
avoid institutionalization. He got case management “off and on,” medication, and therapy. But
he did not report receiving intensive services such as Assertive Community Treatment—which
Missouri does not require all CCBHOs to offer. Missouri’s failure to provide Permanent
Supportive Housing for adults with mental health disabilities also contributed to his
institutionalization. One of DMH’s regional providers tried to help Abraham, but there was no
room in DMH’s housing programs. Without access to needed services, Abraham’s caseworker
recommended guardianship, saying it would help him get Social Security benefits. A public
administrator was appointed. His guardian has since placed him in three different nursing
facilities.
A minority of the people in our sample reported receiving any community-based mental health
services beyond medication and counseling before being institutionalized. We requested
Medicaid billing data from the State that would show whether these reports were typical.
Specifically, we looked at data for th e 333 adults with mental health disabilities who entered
nursing facilities between July and December 2022. The data showed mental health services
each person got in the two and a half to three years before their nursing facility admissions.
Most got a psychiatric evaluation.
But as the infographic on this page illustrates, extremely few
received ACT, housing
services (“ICPR
Residential”), or peer
support, and none got
Medicaid-funded
supported employment.
This data is consistent
with reports we received
from nursing facility
residents and DMH
contracted providers.
Providers told us that it
was rare for someone
who was receiving
services to then enter a
nursing facility and
residents told us they
had not received services
before entering the
nursing facility. The State
does not provide people
at serious risk of entering
nursing facilities with the
needed services to divert
them.
c
-;
;;;
111111111111111111111111111111111111
'
''''''''
p
:;
;;;;
11111111111111111111111111111111111
'''''''''
;;
~;;;
111111111111111111111111111111111111
'''''''''
Number of Adults Admitted to Nursing Facilities in 2022
who Received Community Based Mental Health Services
from 2019-2021
25
B. Missouri has not provided the Permanent Supportive Housing and Assertive
Community Treatment necessary to prevent guardianship and unnecessary
admission to nursing facilities, or support transitions from both
1. Assertive Community Treatment
Assertive Community Treatment (ACT) is an evidence-based model of care—which means it is
proven to work. ACT provides comprehensive, community-based treatment to people with
mental health disabilities.
ACT is delivered by an interdisciplinary team, whose members are
trained in the areas of psychiatry, social work, nursing, substance abuse, and vocational
rehabilitation. Services are highly individualized and designed to address the needs of people
who have the most severe mental health disabilities and need the most wraparound care. This
includes those who are high users of psychiatric hospitals an d other institutions. ACT teams
provide care directly to consumers in their homes and communities, as opposed to at offices or
institutions. A DMH contracted provider described ACT as “essentially a hospital without walls.”
A State official and several DMH-funded community-based mental health providers
ac
knowledge that ACT is an effective way to prevent hospitalization and nursing facility
placement.
63
This is because ACT teams
see people regularly and can notice and
respond quickly if their mental health
declines. Missouri’s ACT services have
had positive outcomes, including allowing
participants to keep a job, and improving
quality of life.
Despite Missouri’s recognition of the
benefits of ACT, there are limited
opportunities for people in Missouri to get
ACT. One reason is that Missouri has
limited ACT availability.
64
As the map on
this page shows and DMH recognizes,
some regions in the State have no ACT.
65
66
Even outside of these regions, ACT is an
underused service. Several public
administrators and staff of DMH
contracted providers had not heard of
ACT. After learning about the service, one
Map of Missouri’s ACT Teams
63
Building Your Program: Assertive Community Treatment, SAMHSA 5-6 (2008), https://perma.cc/B38V-
V42H.
64
The state official also said that ACT can be helpful in avoiding or getting someone out of a
guardianship.
65
Missouri ACT Teams, Mo. Dep’t of Mental Health, https://perma.cc/AYQ3-2JGD (last updated Mar. 18,
2024).
66
Id.
26
public administrator responded: “I would love this, how soon can we get this?” Compounding the
issue, many providers incorrectly believe that ACT cannot be provided to people living in DMH’s
specialized housing for adults with mental health disabilities. So they do not offer it to their
clients even where it is available.
A State official told DOJ: “We need more ACT teams.” Most DMH contracted providers, public
administrators, and directly impacted people we spoke to agreed. DMH could
but does not
require its contracted regional providers to offer ACT. A round half of the adults in our sample
were appropriate for and could benefit from ACT. Only eight of the 333 adults with mental health
disabilities who entered a nursing facility in calendar year 2022 got ACT in the three years
before their admission. Providing ACT could prevent many guardianships and nursing facility
admissions for people with histories of frequent hospitalizations.
2. Permanent Supportive Housing
Permanent Supportive Housing (PSH) is an evidence-based service that offers voluntary,
flexible supports to help people with mental health disabilities choose, get, and keep housing
that is decent, safe, affordable, and integrated into the community.
67
68
The person with a mental
health disability has a standard lease in their own name, for which they typically pay up to 30%
of their income. People living in PSH may get mental health services from community-based
providers. But their ability to stay in their home must not be conditioned on any special rules or
participation in particular services, including compliance with medications or sobriety.
69
PSH
units should be integrated. This means they are located throughout the community or in
buildings in which most units are not reserved for people with disabilities, and residents have
opportunities for interactions with the community. PSH is proven to reduce hospitalizations.
Missouri offers community-based housing for adults with mental health disabilities. But it does
not offer en ough to meet the need and prevent admission to—or return people to the community
from—nursing facilities.
“
Trying to find housing now is the ultimate crisis,” the director
of a
DMH contracted provider told us.
70
67
Certified Community Behavioral Health Center (CCHBC) Certification Criteria, SAMHSA 33-34 (Mar.
2023), https://perma.cc/8W3Q-2GD8.
68
Permanent Supportive Housing, SAMHSA, https://perma.cc/K5H3-BBY4 (last visited January 5, 2024).
69
Permanent Supportive Housing: Evaluating Your Program, SAMHSA 27 (2010), https://perma.cc/YT4L-
K5SA; Permanent Supportive Housing: Training Frontline Staff, SAMHSA 4 (2010),
https://perma.cc/UT93-4X8M.
70
More than a decade ago, the Missouri Institute of Mental Health (MIMH) conducted a statewide needs
assessment and identified housing as one of the “major needs.” Later, regional workgroups that included
DMH officials also found there were insufficient housing options for adults with mental illness in their
areas. DMH is aware of the current need for additional housing, not just to transition nursing facility
residents, but also to move residents from restrictive settings like RCFs. The 2020 DMH’s Least
Restrictive Environment Review found that multiple people were unable to leave an RCF, even though a
lesser restrictive option was more appropriate, due to a lack of ICPR Residential options.
27
Clustered Apartments are one of three types of housing offered as part of DMH’s Intensive
Community Psychiatric Rehabilitation Residential (ICPR Residential) services.
Clustered
Apartments are individual apartments—with one resident per apartment—clustered together in
one or more apartment complexes.
71
Either part time or full-time staff are available to assist
residents.
72
Clustered Apartments scattered through different buildings c an be us ed to provide
PSH. One CCBHO reported that scattered apartments are preferable because buildings that are
entirely Clustered Apartments are hard to manage and can be stigmatizing. Most of the
Clustered Apartment sites we visited, however, were located in segregated buildings not
offering
PSH.
For example, we visited
Clustered Apartments
where 100% of the units
Number of Adults with Mental Health
in a building
were
for
adults with mental health
Disabilities by Housing Type
disabilities. We also visited Clustered
4500
Apartments
that
offered only temporary rather
than
permanent housing and that made
4000
housing contingent on residents being
enrolled
3500
in services
with the DMH contracted provider.
Missouri
could expand
existing
PSH
available
3000
in the State including through
Clustered
2500
Apartments
that offer
PSH.
2000
Only 17 of the 333 nursing facility residents
I
with mental health disabilities who entered a
1500
nursing home in the calendar year 2022
1000
received DMH’s housing services in the three
-• .I
years before entering a nursing facility. This
500
underscores that the State is resorting to
0
institutionalization without offering
less
Kansas City St. Louis Statewide
restrictive options. As the bar graph on this
page
illustrates, far more people are being
■
ICPR Residential
■
High Volume Facilities
housed
in High Volume Facilities than
in
any of
the ICPR
Residential units.
73
71
See Memorandum from Mo. Dep’t of Mental Health to Community Psychiatric Rehabilitation (CPR)
Providers on Intensive CPR for Adults in Residential Settings (Nov. 13, 2020), https://perma.cc/S9EJ-
8RM6. The two other housing types within the ICPR Residential program are Intensive Residential
Treatment Setting (IRTS) and Psychiatric Individualized Supported Living (PISL). IRTS is a congregate
living environment with five to 16 beds. Congregate means that residents live in proximity to each other
and share common areas. At IRTS, full-time staff provide round-the-clock observation and oversight. PISL
is a private home with two to four bedrooms. Each resident has their own room. Staff are available on a
full-time basis. In addition to nursing facilities and ICPR settings, Missouri relies on Residential Care
Facilities (RCFs) to serve adults with mental health disabilities. RCFs are congregate facilities that
provide 24-hour care and oversight, including shelter, food, and medication administration. See Level of
Licensure for Long Term Care Facilities, Mo. Dep’t of Health & Senior Servs.,
https://perma.cc/ZKE8-
3QFS (last visited Jan. 5, 2024). IRTS and RCFs are very similar. In fact, around 28% of IRTS sites are
also licensed RCFs.
72
Id.
73
Id.
28
Almost all the people we reviewed are appropriate for integrated community housing, with
mental health supports. For most of these people, PSH or a completely independent setting
would be appropriate.
C. Other services that people with mental health disabilities need to avoid
guardianship and institutionalization are available but limited
Many other mental health services are also limited in ways that prevent access by people who
need them to avoid unnecessary nursing facility admission and guardianships. Some key
services are not available in every region, resulting in gaps in coverage for people living in those
areas. Others are available but are not being provided to people who demonstrate a need for
more support to stay stable and independent.
1. Case Management – “Community Psychiatric Rehabilitation”
Community Psychiatric Rehabilitation (CPR or CPRP) refers both to the general package of
services provided by DMH contracted providers to adults with mental health disabilities and to
coordination of those services (i.e. case management). CPR services are “designed to
maximize independent functioning and promote community adjustment and integration.” In
addition to case management, CPR includes assessment, treatment, community support
services (help with developing and meeting goals, learning skills, and managing symptoms),
and referrals to other services such as supported employment and peer support services. All of
the adults in our sample were appropriate for and could benefit from CPR—or a more intensive
service such as ACT or ICPR.
Missouri has also developed non-residential Intensive CPR services. Intensive CPR, or ICPR, is
intended to prevent institutionalization or help people return to the community. In theory, it can
be offered as a short term intensive service or on an ongoing basis as an alternative to ACT.
However, ICPR is not meeting the need for frequent contact or daily medication support.
Instead, DMH contracted providers assume that those who need medication support belong in
residential settings.
In practice, few people who need ICPR to avoid a nursing facility placement or to transition out
actually get it. Only two people with mental health disabilities who were admitted to nursing
facilities in calendar year 2022 had gotten non-residential ICPR in the three years before
entering a nursing facility. Clearly, the service is not reaching this important target group.
2. Peer Support Services
Peer support services are a type of mental health care and support that is provided by
individuals with lived experience of mental health and/or substance use recovery.
74
Peers
provide a living example of understanding, respect, and empowerment; “by sharing their
experiences, peers bring hope to people in recovery and promote a sense of belonging within
75
74
Intensive CPR for Non Residential Adults, Mo. Dep’t of Mental Health (June 26, 2014),
https://perma.cc/Z8SA-KZHP.
75
Peer Support Services, Mo. Dep’t of Mental Health, https://perma.cc/44AQ-RWT8 (last visited Jan. 5,
2024).
29
the community.”
They “can effectively extend the reach of treatment beyond the clinical setting
into the everyday environment of those seeking a successful, sustained recovery process.”
76
77
Many providers we spoke to recognized the value of peer supports. Peer support services are
critical to engaging people in care. This in turn is critical to reducing the “likelihood of a return to
mental health symptoms” and avoiding institutionalization. One effective way peer supports can
be delivered is through peer-run drop-in centers. Peer-run drop-in centers are community-based
sites owned, administratively controlled, and managed by peers. The centers provide a
welcoming environment and a wide range of activities, including support groups, recreational
and social events, and linkages with support services.
Missouri does not regularly use peer support to prevent the unnecessary institutionalization of
people in nursing facilities. There are four peer-run drop-in centers in Missouri, in Springfield, St.
Louis, Kansas City, and Cape Girardeau.
78
However, as DMH acknowledged in its most recent
needs assessment the availability of peer supports “across the system of care is highly
variable.” Peer
support is one service our experts identified as necessary to support return to
the community for a large majority of individuals in our sample. However, only 23 people of the
333 nursing facility residents with mental health disabilities admitted in calendar year 2022 got
Medicaid-funded peer support services in the three years before admission.
3. Supported Employment
Supported employment services help people with mental health disabilities find and maintain
meaningful, competitive, and paid employment.
81
It has, in the words of the State, “tremendous
therapeutic value.” Being engaged in a job can support stability in the community.
79
80
Individual
Placement and Support (IPS) is an evidence-based supported employment model.
82
An
essential value of IPS is that everyone with a mental health disability can work and everyone
83
76
Id.
77
Id.
78
Building Your Program: Consumer-Operated Services, SAMHSA 1, 55 (2011), https://perma.cc/LC5B-
6AD8.
79
MO Consumer Operated Drop In Centers, Mo. Dep’t of Mental Health (Mar. 15, 2023),
https://perma.cc/6CBB-7646.
80
Jessica Bounds, Certified Community Behavioral Health Organizations (CCBHO) Expansion in
Missouri, Mo. Dep’t of Mental Health 31, https://perma.cc/C88T-G7ZU
(last visited Jan. 5, 2024).
81
Division of Behavioral Health Employment Services, Mo. Dep’t of Mental Health,
https://perma.cc/D8FL-2VL5 (last visited Jan. 5, 2024).
82
Robert Drake et al., Individual Placement And Support Services Boost Employment For People With
Serious Mental Illnesses, But Funding Is Lacking, Health Affairs 35:6 (June 2016),
https://perma.cc/D23C-FR6Y.
83
The Evidence: Supported Employment, SAMHSA 7 (2009), https://perma.cc/F2K9-LYXP.
30
with a mental health disability is eligible for the service right away.
Supported employment for
adults with mental health disabilities is a Medicaid service in Missouri. DMH reports that half of
IPS participants are employed within 90 days.
Many of the adults with mental health disabilities we spoke to—including those currently stuck in
nursing facilities—said they wanted to work. When we asked Harris what he needed in the
community to be successful, he told us he wanted a job. Christopher told us his wish was to be
in his own apartment and trying to get a job. Eddie said he wants a job in landscaping. Almost
half of all the adults in our sample—including Harris, Christopher, and Eddie—are appropriate
for supported employment. There are 33 IPS sites across Missouri, but areas of the State
remain unserved.
84
None of the adults with mental health disabilities who entered a nursing
facility in calendar year 2022 got Medicaid-funded supported employment in the three years
before their admission.
4. Mobile Crisis Response
Mobile crisis teams provide community-based interventions to people experiencing mental
health crises. The goal is to provide rapid response, assessment, and resolution wherever the
person is experiencing the crisis.
85
Mobile crisis services are “effective at diverting people in
crisis from psychiatric hospitalization, effective at linking suicidal individuals discharged from the
emergency department to services, and better than hospitals at linking people in crisis to
outpatient services.”
86
For this reason, they are an essential part of any mental health system.
The mobile crisis response system in Missouri is in flux, as the State sets up the nati onwide 988
suicide and crisis line. While the State has established statewide coverage for mobile crisis
response when needed, the State does not ensure that central elements of mobile crisis are
consistently provided across the State. This includes staffing for mobile crisis teams, and
connection to lasting services after the crisis intervention.
87
To prevent people from entering
nursing facilities
after a crisis and to support people returning from a nursing facility
who may
experience a mental health crisis in the future, mobile crisis will be key.
The impact
of the service in diverting people and connecting them to lasting
support
is also not
clear currently.
This is
because the State does not track
whether people who experience
mental
health crises are current users of other mental health services or are successfully
connected to
services after their crisis. In a s
ystem where unresolved mental health crises can start a person
88
84
Building Your Program: Supported Employment, SAMHSA 3-4 (2009), https://perma.cc/J5XL-WLSR.
85
Individual Placement & Supports Program Sites Map, Mo. Dep’t of Mental Health (Oct. 16, 2023),
https://perma.cc/43JZ-2W9V
86
National Guidelines for Behavioral Health Crisis Care Best Practice Toolkit, SAMHSA 18-19 (2020),
https://perma.cc/3KJN-TP7T.
87
Id. at 19.
88
National standards call for mobile crisis coverage to be team based, make use of peer support
specialists, and provide a truly mobile response all day every day. Id. at 18, 21. Connecting people to
lasting services is, according to SAMHSA, an “essential element” of crisis response. Id. at 21.
31
down the pathway to guardianship and a nursing facility, monitoring to ensure that people who
experience crises are connected to lasting mental health services is key.
5. Crisis Stabilization S ervices
Crisis stabilization services are provided in community settings as an alternative to emergency
room and hospital admissions to help stabilize a person in crisis and connect them to lasting
care.
National guidelines describe crisis centers as safe settings in the community that accept
all referrals and walk-in visits from people in crisis regardless of acuity.
89
A multidisciplinary
team of peers and clinical staff support these individuals to resolve crises in 24 hours or less
and coordinate connections to lasting care.
Peer-operated respite programs, where peers with
lived experiences provide crisis services in a restful, sanctuary environment are another
valuable crisis service that can enable people to stabilize without entering an institutional
setting.
90
91
Missouri’s CCBHOs offer crisis stabilization services at community-based sites called
Behavioral Health Crisis Centers across the state. As of May 2024, there are 18 centers in the
state,
with plans to develop five more centers.
When people who are currently in or at risk of
nursing facility placement are in the community and seeking to resolve a crisis short of an
institutional admission to a psychiatric hospital, crisis stabilization services are a critical tool. But
in Missouri, the crisis stabilization system is currently inconsistent: not all the centers are open
24/7
and beds are often at capacity. Areas of the State also remain unserved.
6. Outreach and Engagement Initiatives
DMH has some outreach and engagement initiatives aimed at working with people with mental
health disabilities who are high cost, frequent hospital users. Disease Management 3700 is a
project to identify people with mental health disabilities who are high-cost users of Medicaid
services and assign DMH contracted providers to conduct intensive outreach to them to engage
frequent users in services. It began in 2010 and showed “improvements in the health status of
92
93 94
95 96
89
Id. at 22-23
90
Id. at 12, 22-23.
91
Id. at 22-23
92
Id. at 25
93
Eight of the centers are structured as urgent care units and one is specialized in substance use. There
are several peer-operated respite programs for substance use, but none for mental health disabilities.
94
Mo. Behavioral Health Council & Mo. Dep’t of Mental Health, Behavioral Health Crisis Centers, Mo.
Behavioral Health Council, https://perma.cc/J7AQ-K9D9 (last visited Jan. 5, 2024); Behavioral Health
Crisis Centers, Mo. Behavioral Health Council (Feb. 2024), https://perma.cc/S8VW-QLAS
95
Id.
96
Mo. Behavioral Health Council & Mo. Dep’t of Mental Health, Behavioral Health Crisis Centers, Mo.
Behavioral Health Council, https://perma.cc/J7AQ-K9D9 (last visited Jan. 5, 2024) (map of BHCCs).
32
the individuals who were engaged in services and significant reductions in the cost to Medicaid
for their care.”
There is also funding available for providers to hire staff to work on Emergency
Room Enhancement (ERE). ERE trains hospital staff to refer people with mental health
disabilities who are frequent users of emergency room (ER) services to ERE outreach workers,
who connect those people to community-based mental health services.
97
98
The State reports a reduction in hospitalizations, ER visits, homelessness, and unemployment
for people who are connected to community-based services through ERE.
Community
Behavioral
Health Liaisons perform a similar function for people who interact with law
enforcement and the criminal justice system.
99
In sum, the State’s own data show that its
outreach and engagement efforts, when they occur, successfully help Missourians with mental
health disabilities access community-based services and avoid institutionalization. However, the
number of people currently in restrictive guardianships and nursing facilities
after repeated
emergency room or hospital stays shows that these outreach and engagement initiatives are not
actually
reaching many
in the population they are intended to serve.
7.
Supported Decision-Making
As discussed on pages 15 and 20, Supported Decision-Making
(SDM) could serve as an
alternative to guardianship for many adults with mental health disabilities in Missouri.
DMH
worked with a coalition to create resources for people using alternatives
to guardianship, which
are available online.
100
But SDM
is not being offered or implemented widely.
SDM is consistent with
the services
described above.
For example, case managers can assist
clients
with identifying areas in their
life where they need assistance, what kind of assistance
they need, and who could provide it. Case managers can also provide information and
assistance with filling out forms such as health information releases. In addition, support and
assistance with making decisions related to housing, employment, and healthcare is
a key
component of ACT, PSH, peer support services, supported employment, and case
management.
Thus, each of these services
could be used to support a person using SDM
in
place of a traditional
guardianship.
101
97
DM 3700 Clients Enrolled in CMHC Healthcare Homes, Mo. Dep’t of Mental Health 2 (Feb. 21, 2014),
https://perma.cc/Q93H-24U5.
98
FY 2023 ERE Infographic, Mo. Dep’t of Mental Health 2, https://perma.cc/D44F-8JXJ (last visited Jan.
5, 2024).
99
Id.
100
CBHL Staffing and Job Expectations, Mo. Dep’t of Mental Health (Jan. 2023), https://perma.cc/HL2Q-
FWVS.
101
Alternatives to Guardianship Project, Materials, MO Guardianship (Sept. 2013),
https://perma.cc/5ZNQ-RQHF. The Alternatives to Guardianship Project is collaboration between the
UMKC-Institute for Human Development, UCEDD, the Missouri Developmental Disabilities Council,
Missouri Protection & Advocacy Services, and the Missouri Department of Mental Health. See id.
33
MISSOURI HAS FAILED TO DIVERT AND TRANSITION ADULTS WITH MENTAL
HEALTH DISABILITIES FROM NURSING FACILITIES
Missouri has made deliberate policy choices that result in unnecessary institutionalization of
people with mental health disabilities in nursing facilities.
A. Missouri’s nursing facility eligibility criteria and reimbursement systems
enable and encourage the long-term use of nursing facilities for people with
mental health disabilities
Missouri has set up a system that allows people with mental health disabilities who do not have
physical health needs to be considered eligible for nursing facility admission. This results in
unnecessary segregated placements. In Missouri, a person qualifies for a nursing facility if they
“exhibit physical impairment, which may be complicated by mental impairment or mental
impairment which may be complicated by physical impairment, severe enough to
require…skilled nursing care.”
102
When assessing whether a person meets this standard,
Missouri uses
a point system.
Anyone who reaches 18 points
is
eligible to go to a
nursing
facility,
103
and it is relatively easy to accumulate the necessary 18 points without any, or with
minimal, physical health care needs. Missouri assigns nine points if the person has an “unstable
mental condition” monitored by a professional at least monthly and the person is exhibiting
behavior symptoms or if the person is exhibiting “psychiatric conditions.” Nine more points are
assigned for “displaying consistent unsafe or poor decision-making.” Three more points are
assigned if the person needs some help with medication, including setting it up or supervision.
This results in many people with mental health disabilities being found eligible without physical
health needs.
The recent roll out of thi s 18-point system was intended to increase nursing facility eligibility for
adults with mental health disabilities. The system was designed based on the faulty assumption
that expanding nursing facility eligibility would increase this group’s access to needed
community-based services. Eligibility for some kinds of community-based services are tied to
institutional eligibility.
104
But the community-based mental health services offered at DMH
contracted providers are available to all Medicaid-enrolled individuals who meet the diagnostic
105
102
Missouri reduced the number of adults with mental health disabilities institutionalized long-term in its
state psychiatric hospitals. A former state official and CMHC leader said the State did not create sufficient
community-based housing options for people leaving hospitals. So many adults with mental health
disabilities still went to nursing facilities. In response, nursing facilities rebranded and marketed
themselves to guardians as providers of secure housing and other basic services.
103
Mo. Code Regs. Ann. tit. 19, § 30-81.030(5)(E)(4)(C).
104
Id. 30-81.030(5)(E)(5)(C).
105
Go Long Consulting, Technical Assistance Report to The State of Missouri Department of Health and
Senior Services on the Nursing Facility (NF) Level of Care (LOC) Transformation, Mo. Dep’t of Health and
Human Servs. (Dec. 2018), https://perma.cc/XG6P-GXB5
; DHSS Home & Community Based Services
Waiver Summary, Mo. Dep’t of Social Servs. (Jan. 5, 2023), https://perma.cc/B6PU-8CCY (waivers
require people to meet nursing facility level of care).
34
criteria, without regard to whether they qualify for nursing facility admission.
106
Making it easier
to qualify for a nursing facility doesn’t make those mental health services more accessible to
people with mental health disabilities. But it does encourage needless admissions to a less
integrated setting.
Missouri is aware of and encourages the concentration of people with mental health disabilities
in the High Volume Facilities. The State recently changed its payment methodology.
107
It now
adds an extra $5 per resident/per day i f 40% or more of a facility’s Medicaid residents have
schizophrenia or bipolar disorder. This encourages the concentration of people with mental
health disabilities.
108
For State Fiscal Year 2023, excluding the extra $5, the daily rate for nursing facilities ranged
from $156.52 to $382 per person. Assuming eac h of the 3,289 people with mental health
disabilities who do not have a co-occurring diagnosis of Alzheimer’s and dementia spent a full
year i n a nursing facility billing the median daily rate, Missouri Medicaid spent $222.8 million on
those nursing facility stays in Fiscal Year 2023. This does not account for the extra $5/day.
B. Missouri’s system does not divert people with mental health disabilities from
nursing facilities
Missouri is required to have a Preadmission Screening and Resident Review (“PASRR”)
system.
109
PASRR requires a screening whenever a person seeks admission to a Medicaid-
certified nursing facility to identify if they have a “serious mental illness” and if so, whether they
need a nursing facility level of service.
110
It is an important process “to help ensure that
individuals are not inappropriately placed in nursing homes for long term care.”
111
Congress
mandated PASRR “specifically to end the practice of inappropriately institutionalizing individuals
with mental illness…in nursing homes.”
112
Applicants who may have a “serious mental illness” must be evaluated to confirm the diagnosis
and decide the answer to three questions. These are: (1) Can the individual’s needs instead be
met in a community setting? (2) If not, is a nursing facility appropriate? (3) If a nursing facility is
106
Mental Illness – Adults and Children, Mo. Community Options & Resources, https://perma.cc/43ZG-
FKQB (last visited Jan. 5, 2024) (mental health services available to anyone Medicaid-eligible)
107
Missouri Medicaid Nursing Facility Reimbursement Methodology Summary for Fiscal Year 2023, Mo.
Dep’t of Health & Senior Servs., https://perma.cc/Z2G8-PWEA (last visited Jan. 5, 2024).
108
Id.
109
42 U.S.C. § 1396r(e)(7). PASRR requirements apply to people with serious mental illness and to
people with intellectual disabilities. For purposes of this investigation, we limit our discussion only to
people with mental illness.
110
42 C.F.R. §§ 483.128(a), 483.112(a).
111
Centers for Medicare & Medicaid Services, Preadmission Screening and Resident Review,
Medicaid.gov, https://perma.cc/37WQ-RJW9 (last visited Jan. 5., 2024).
112
Joseph S. v. Hogan, 561 F. Supp. 2d 280, 285 (E.D.N.Y. 2008).
35
appropriate, are Specialized Services needed?
113
These determinations are separate and apart
from whether a person meets the eligibility criteria described on page 34 above.
114
Despite labeling PASRR as a tool for diversion,
115
Missouri does not in fact use it as one.
Between State fiscal years 2019 and 2023, on average less than 2% of nursing facility residents
each year were deemed inappropriate for a nursing facility after a Level II evaluation. In
Missouri if a person is found to meet the Level of Care for a nursing facility, the PASRR Level II
evaluation does not divert the individual from a nursing facility, unless the person is assessed to
require inpatient hospitalization.
Missouri also does not use data about the number of PASRR evaluations or their outcomes to
measure whether the PASRR system is serving its diversionary goal. Nor does Missouri use
data from PASRR Level II evaluations to measure demand for community-based services that
could prevent nursing facility admissions. Missouri furthermore does not use data to monitor
whether people in nursing facilities are appropriate for discharge to a more integrated setting.
In sum, Missouri uses PASRR in precisely the problematic way described in a 2015 report by
the federally-funded PASRR Technical Assistance Center: as “merely an administrative step in
the nursing home admission process—a series of boxes to be checked.”
C.
M
issouri lacks
other
effective processes to support diversion and transition
from nursing facilities
Missouri does not have a
plan
that shows how it will work to divert and transition people with
disabilities from institutions, in compliance with the ADA. Other than—in theory but not in
practice—PASRR,
the State has no processes, services, or initiatives that are specifically
intended
to help divert
people with mental health disabilities, or
transition
them from nursing
facilities.
117
Without them, the current segregation of people with mental health disabilities
continues. Existing processes, services, and initiatives that divert and transition people from
institutions are not effectively targeting this population:
116
113
42 C.F.R. §§ 483.130(l), (m). This is called a Level II evaluation. Id. at § 483.128(a).
114
See id. § 483.132. Thus, one potential outcome of the PASRR Level II determination is that the person
cannot be admitted to a nursing facility because they do “not require the level of services provided by a”
nursing facility. Id. § 483.130(m)(2).
115
PASRR Level II Evaluations, Mo. Dep’t of Mental Health, https://perma.cc/5YXZ-EUJQ (last visited
Jan. 5, 2024).
116
2015 PASRR National Report: A Review of Preadmission Screening and Resident Review (PASRR)
Programs, PASRR Technical Assistance Center 7 (Dec. 2015), https://perma.cc/XVB7-48QH.
117
We asked the State if it had any such processes, services, or initiatives. The State responded by
identifying most of the community-based services described on pages 26-33 of this report. We agree that
the existence of community-based services is necessary for compliance with the ADA. But, without
targeted work to ensure that people with mental health disabilities in fact get those services and are
diverted and transitioned from nursing facilities, the existence of those services is not sufficient.
36
• Additional Assessments: When people are hospitalized for mental health reasons,
Missouri has requirements for additional assessments of people with extended stays to
determine whether continued hospitalization is appropriate. Missouri does not have any
similar requirements for people with mental health disabilities in nursing facilities, even
though people with mental health disabilities should be expected to improve with
appropriate care.
118
• Money Follows the Person: Missouri put in place the Money Follows the Person (MFP)
program to help people move out of nursing facilities and transition to community living.
However, the program targeted older people and people with physical disabilities. As of
August 2021, only 1.9 percent (40 out of 2,161) of the people who transitioned from a
nursing facility through MFP since approximately October 2007 were identified as having
a mental illness.
• Least Restrictive Environment Reviews: DMH conducts reviews of whether people in
some residential facilities are in the least restrictive environment. But i t does not conduct
the reviews in nursing facilities.
119
• Mental Health Healthcare Homes: Mental Health Healthcare Homes are programs (not
physical spaces) that are “designed to integrate care for chronic health conditions into
the CMHC setting” by also monitoring each person’s physical health conditions and
intervening when appropriate.
120
The State identified heal thcare homes as a program
that diverts people from nursing facility placement. Because most people with mental
health disabilities are not entering nursing facilities due to physical health challenges,
healthcare homes are not a program that can reasonably be expected to divert them
from nursing facility placement.
In addition to these examples, Missouri has failed to divert and transition adults with mental
health disabilities from guardianships that place them at higher risk of institutionalization in
nursing facilities. Guardians can and have prevented people with mental health disabilities from
118
Some people who get a Level II PASRR evaluation may be recommended for a second evaluation
after 180 days. However, this second evaluation is much like the first—an exercise in form completion
and not a meaningful opportunity to identify people who could be appropriately served in a community
setting.
119
While Least Restrictive Reviews are a positive activity, the State does not actually help with
transitioning everyone the State identifies as appropriate for a more integrated setting to those settings.
For example, DMH found that 43-year-old Roy, who was living in an RCF at the time, was appropriate to
“live on his own with continued support from [DMH contracted provider] and his psychiatrist for symptom
and medication support.” Five months later his public administrator placed him in a nursing facility.
Despite Missouri’s failure to divert and transition him, Roy still dreams of living in the community and
wants to start a business. He said his wish is to “gain my life back from what’s been taken from
me…That’s the American Dream that’s been taken from me.”
120
Community Mental Health Center (CMHC) Healthcare Homes, Mo. Dep’t of Mental Health,
https://perma.cc/9EGA-VZNR (last visited Jan. 5, 2024). For 2021, the most recent year for which the
State published an annual report, the State reported improvements in various markers of physical health
and some achievement of program goals.MO CMHC Healthcare Home Annual Report 2021, Mo. Dep’t of
Mental Health
https://perma.cc/HY2U-EP5V.
37
discharging from nursing facilities and accessing community-based services by refusing to
consent to alternative services. Sometimes these actions conflict with the recommendations of
nursing facilities or providers themselves. D
uring the 2020 least restrictive environment
reviews conducted at RCFs, DMH concluded that for several people, the guardian was a barrier
to integration. D espite the State’s awareness of how guardianship can perpetuate unnecessary
restriction and isolation, Missouri has failed to offer guardians education regularly and
systemically on its community-based mental health services or to assist with or promote
guardianship terminations. Missouri does not take steps to reevaluate the need for the
guardianships it has filed or to assist adults with mental health disabilities in ending
unnecessary guardianships.
DMH FAILS TO EXERCISE MEANINGFUL OVERSIGHT OF THE BEHAVIORAL
HEALTH SYSTEM TO PREVENT UNNECESSARY NURSING FACILITY PLACEMENT
DMH’s approach to regulating the mental health system contributes to the dynamics described
in this Report. Some of this can be traced to the diffuse responsibility among state agencies for
people with mental health disabilities in nursing facilities. In short: DMH is the agency
responsible for “maintain[ing] and enhance[ing] intellectual, interpersonal, and functional skills of
individuals” with metal health disabilities.
121
122
DHSS handles licensing and certification, and
investigations of abuse and neglect. Medicaid pays the bills. This allows each agency to
assume that the other two agencies are taking steps to ensure that the complete service
delivery system runs efficiently, effectively, and in accordance with the ADA. But when it comes
to intensive services for people with mental health disabilities, none of the agencies are doing
so and none of the agencies are collaborating with the others to ensure there are no gaps.
Key State offi cials and DMH contracted providers are not focusing attention or resources on the
thousands of adults with mental health disabilities in nursing facilities.
The invisibility of this
institutionalized people means that the State does not work to address it.
123
For example, the
State does not use PASRR to identify people entering institutions without connection to
appropriate mental health services, geographic gaps in mental health service availability, or
unmet demand for additional services. We did not identify any evidence that the State uses the
data gathered by PASRR to monitor performance of the system for serving people with mental
health disabilities.
The State also does not ensure that its staff and contracted providers engage in necessary
service coordination and planning to support informed choice and transitions. It does not require
that providers connect with people with mental health disabilities to assist in transitions from
121
According to the manual for the mental health program referenced on page 21 above that is offered at
many of the High Volume Facilities, the program “is designed to show your guardian how much you have
grown.” A staff member in charge of discharge planning at a High Volume Facility acknowledged that
some guardians will refuse a more integrated setting even when the facility believes it is appropriate.
122
Mo. Rev. Stat. § 630.020(2).
123
The Director of DMH’s Division of Behavioral Health agreed that the mental health service system
bears responsibility for diverting and transitioning people with mental health disabilities away from nursing
facilities. But this viewpoint was drowned out by her colleagues who consistently said they were unaware
of or not responsible for (or both) the population of adults with mental health disabilities currently in
nursing facilities.
38
nursing facilities. When DHSS APS workers encounter someone who is not being appropriately
served by a DMH provider, there is no mechanism for DHSS to engage with DMH to hold that
provider accountable. There is also no evidence that the needs of this cohort are considered
when setting service delivery targets or assessing whether the mental health service system is
meeting the needs of adults with mental health disabilities. In sum, because the State has not
focused on the thousands of adults with mental health disabilities stuck in nursing facilities
unnecessarily, it is not managing its system to divert them from these settings or to help
transition them out.
IT IS A REASONABLE MODIFICATION TO SERVE ADULTS WITH MENTAL
HEALTH DISABILITIES IN THE COMMUNITY
The evidence described above shows that people with mental health disabilities in Missouri are
not being served in the most integrated setting appropriate, violating the ADA’s prohibition
against unnecessary isolation.
The State must make reasonable modifications to its system
to avoid this discrimination, unless doing so is a fundamental alteration.
124
Here, the State must
provide critical community-based services to people who would otherwise be unnecessarily
institutionalized in nursing facilities. Missouri must also provide alternatives to guardianship. And
the State must c arry out effective diversion and transition planning to reduce unnecessary
segregation. The changes that are needed are
not fundamental alterations.
Providing community-based services including
ACT, Permanent Supportive Housing, peer
support services, supported employment, crisis
services, and Supported Decision-Making to
people who would otherwise be in nursing
facilities is a reasonable modification. These
services have already been identified by the
State as effective and are already available to
some in Missouri. Providing these same services
to people who need them to transition from and
avoid nursing facilities is reasonable.
Most of the community-based mental health
services in Missouri are provided through
CCBHOs, which are intended to expand and
improve “the availability, accessibility, and
quality” of services.
125
The State recognized that shifting to a CCBHO model “would require
significant expansion of the scope of services and practices available in some service areas.”
126
127
It
cost Missouri Medicaid
$5,000 a month to keep
me
here. Boy what I could
do with $5k a month out
in
the community. Can you
imagine what nice of a
place I would have. I can
use my social security to
buy my own groceries,
being free
."
-Angela
124
42 U.S.C. § 12132; 28 C.F.R. § 35.130(d).
125
28 C.F.R. § 35.130(b)(7).
126
Narrative Section of Missouri’s Application to Participate in the Demonstration, Mo. Dep’t of Mental
Health 18-19, https://perma.cc/2XW7-42Z9 (last visited Jan. 5, 2024).
127
Id. at 19-20.
39
But that expansion was consistent with the State’s priorities of expanding community-based
service and de-institutionalization. The State also recognized the importance of tracking who
actually gets services and measuring program effectiveness based on whether the people who
need care actually get it. It i
s reasonable, and not a fundamental alteration to hold Missouri to
its own goals and commitments.
128
129
The fact that some of these changes might result in short-term increases in spending does not
render them unreasonable.
130
Missouri has recognized that serving people in community
settings instead of nursing facilities is likely to result in cost savings.
131
In the long term, the
costs are largely comparable.
For State Fiscal Year 2023 the daily rate for nursing facilities
ranged from $156.52 to $382 per person, without accounting for the potential $5/day
mental
health premium payment.
The daily rate for community-based mental health services ranges
from
$204.80 to $304.91.
It is billed only on days
when a person gets
services.
By definition,
every day
in a nursing facility
is a billable day
for every
person.
By contrast, not all people will
get
mental health services every day.
One State employee acknowledged to us that nursing
facilities
are the “least cost-effective option” for supporting someone.
As described on pages
36-38
above, Missouri already has diversion and transition processes,
services, and initiatives that target people in or at risk of entering other institutions. It is
inherently reasonable to make sure those processes, services, and initiatives are effective and
target people with mental health disabilities in nursing facilities
too. Similarly, it is reasonable,
and not a fundamental alteration, for
Missouri to use its
PASRR program
in a manner that
effectively
diverts
people from nursing facility
admissions
when they could live in a more
integrated setting.
Missouri must also
address its inappropriate reliance on guardianship to serve adults with
mental health disabilities. Missouri has an obl
igation under the ADA to avoid unnecessary
institutionalization of adults with mental health disabilities—which is facilitated by Missouri’s use
128
Id. at 24.
129
Henrietta D. v. Bloomberg, 331 F.3d 261, 280-81 (2d Cir. 2003) (upholding as a reasonable
modification an order requiring agency to “perform its statutory mandate”); Townsend, 328 F.3d at 519
(holding remedy was a reasonable modification, finding it consistent with the State’s “explicit policy
preferences for home- and community-based care”); Haddad v. Arnold, 784 F. Supp. 2d 1284; 1304-07
(M.D. Fla. 2010) (holding the provision of a service that the State chose to include in its own service
system to additional individuals is not a fundamental alteration); Messier v. Southbury Training School,
562 F. Supp. 2d 294, 344-45 (D. Conn. 2008) (same).
130
Pa. Prot. & Advocacy, Inc. v. Pa. Dep’t of Pub. Welfare, 402 F.3d 374, 380 (3d Cir. 2005) (“budgetary
constraints alone are insufficient to establish a fundamental alteration defense”); see also Fisher v. Okla.
Health Care Auth., 335 F.3d 1175, 1183 (10th Cir. 2003) (“If every alteration in a program or service that
required the outlay of funds were tantamount to a fundamental alteration, the ADA’s integration mandate
would be hollow indeed.”).
131
Rapid Response Review – Assessment of Missouri Medicaid Program Final Report, Mo. Dep’t of
Social Servs. 43 (Feb. 11, 2019), https://perma.cc/W4X5-B6V6 (“Opportunities to improve quality and
control costs of LTSS are primarily to be realized from increasing the proportion of LTSS recipients that
receive services at home or in the community rather than in more costly institutional settings, and
improving care planning and care management of members regardless of their setting of care.”).
40
of guardianship. Missouri established Supported Decision-Making as an alternative to
guardianship under the law. In doing so, Missouri itself identified a reasonable modification that
could, in combination with community-based services, prevent unnecessary segregation for
people who need some help managing their affairs.
132
In sum, Missouri could serve adults in the most integrated setting appropriate to their needs and
comply with Title II of the ADA by reasonably modifying its service system. This must
necessarily include remedies aimed at eliminating the State’s reliance on guardianship.
Remedial measures should include:
• Ensuring that community-based services are available and are provided t o people
who need them to prevent unnecessary guardianships and nursing facility
placement. Services the State should ensure are available and accessible include
Assertive Community Treatment, peer support, supported employment, Intensive
Community Psychiatric Rehabilitation (ICPR Non-Residential), mobile crisis response,
and crisis stabilization services. The State should consider input from adults with lived
experience in expanding its services.
• Ensuring that integrated housing is accessible and available in sufficient
quantities to prevent unnecessary institutionalization. This would include expanding
availability of Permanent Supportive Housing including Clustered Apartments that offer
PSH.
• Ensuring that t ransition services from nursing facilities effectively assist nursing
facility residents with mental health disabilities w ho do not oppose living in a
more integrated setting to make choices about living settings and transition out of
nursing facilities. This will include doing regular in-reach in nursing facilities to identify
adults with mental health disabilities who wish to transition to, or are interested in
learning more about, integrated housing with supports; providing individualized
education on available community-based services and supports (including through peer
support) to adults with mental health disabilities and their guardians; engaging in
comprehensive transition planning; and ensuring that the people have access to
services they need to stay in community-based settings post-transition. The State should
ensure that the rights of people under guardianship to speak to people of their choosing
are not violated through this process, and that people under guardianship can get in-
reach.
• Ensuring effective diversion from nursing facilities. This would include identifying
people when admission to nursing facilities is sought, identifying their needs and the
most integrated setting appropriate to those needs, and engaging in assertive efforts to
direct them to those settings. This can be done using the federally mandated PASRR
process or other processes.
132
See 28 C.F.R. § 35.130(b)(7)(i); Mo. Rev. Stat. §475.075(13)(4) (2022) (“Before appointing a guardian
or conservator, the court shall consider whether the respondent’s needs may be met without the
necessity of the appointment of a guardian or conservator, or both, by a less restrictive alternative
including, but not limited to . . . Supported decision-making agreements or the provision of protective or
supportive services or arrangements provided by individuals or public or private services or agencies.”).
41
• Ensuring appropriate diversion and transition from unnecessary guardianships
for adults with mental health disabilities. This should include expanding Supported
Decision-Making; training State employees, psychiatric hospitals, and service providers
on the use of guardianships and alternatives to guardianship; revising State policies on
when to petition for guardianship; regularly reviewing the capacity of people under
guardianships who get services from the State and seeking to terminate unnecessary
guardianships; and ensuring meaningful oversight over public administrators.
CONCLUSION
We conclude that there is reasonable cause to believe the State fails to provide services to
adults with mental health disabilities in the most integrated setting appropriate, in violation of the
ADA.
133
Because of deficiencies in its community-based service array and the manner in which
the State administers its adult mental health system, the State relies on segregated settings to
serve adults with mental health disabilities who could be served in their homes and
communities.
We look forward to working cooperatively with the State to reach a resolution of our findings. We
are required to advise you that if we cannot reach a resolution, the United States may take
appropriate action, including bringing a lawsuit, to ensure the State’s compliance with the ADA.
Please also note that this Report is a public document. It will be posted on the Civil Rights
Division’s website.
133
See 42 U.S.C. § 12132; 28 C.F.R. § 35.130(d).
42
